LNN

My DD7 had Epstein Barr for 4 months this fall/winter. We tried a few things that didn't work, and then we tried l-lysine. Within days, she felt much better. Within 2 weeks, we were able to increase her school hours from 4 hrs/day to 6 hrs/day and after a month, she returned for a full day. The one caution is that l-lysine can increase anxiety. So I used tryptophan to counteract. We eventually stopped the lysine after 3 weeks due to her agitation, otherwise I'd have kept her on it a little longer. Now, 3 months later, she is starting to complain about fatigue again but nothing debilitating and between allergies and some things we're doing for methylation, it's hard to say if it's EBV or just that we're in the process of re-balancing and this is a natural side effect. Will ask to have her titers re-checked when she sees the Dr in 2 months but for now, I'm working on the assumption it's something other than EBV. If it is EBV, we'll re-start l-lysine.

I don't know enough of your story to ever attempt to say anything specific about your son. But I'm going to toss out a general theory and see if any of it strikes a chord... IMO, if a child had symptoms that put him on the spectrum and these symptoms eventually went away, then it seems that what you were seeing wasn't some sort of permanent disability or damage but rather the body's inability to cope with something that, over time, became less of a problem. So maybe there was a toxin problem - from a vaccine, from metals, from a nutritional imbalance, inflammation from a chronic infection...- and the body really struggled - due to a methylation problem, an excess of a neurotransmitter, leaky gut, an autoimmune response, etc. As the child grows and you pursue various treatments, the body starts to clear the roadblocks and behaviors improve. So it sounds like you enjoyed a period of good health where you felt the nightmare was behind you. And now there's some sort of chronic infection that's recreating some sort of toxic build up. Antibiotics rarely are enough to clear an infection. Most abx slow down the reproduction of bacteria and kill some bugs, which gives the body more time to actually kill the remaining bacteria and win the war. But it's the combo of abx plus the immune system that gets the job done, not abx alone. So maybe the abx initially slow things down, but the immune system isn't robust enough to do its part and slowly, the bacteria win the numbers war and become an overwhelming force again. It's possible that this time, the augmentin is doing a better job at killing whatever bacteria is there. But when bacteria die, some strains can release a toxic die-off. If the body can't handle those toxins, then you could see a return of autism-like behaviors, pandas-like behaviors or other neuropsych symptoms. I don't know what sort of ASD treatments you did, so I'm sorry if this is something you already know. Just tossing out a way to look at the problem. You may want to read up on biofilms, which can shelter chronic infections, and on detox and methylation. This is a really good 20 min overview that talks about some of these issues

PMd you with options I'm aware of.

Every year, the 6th graders in our district go on a 3 day camping trip. My 4th grader already knows he won't be going. Am I robbing him of memories? Yes. But I might also be robbing him of memories of spending Jr High with lyme. If we hadn't spent the past 3 yrs fighting for health, I'm sure I'd feel differently. But it isn't worth the risk, IMO.

There are several components to treating lyme. There's obviously the need to take something to kill the bacteria. But there's also a need to replace/balance the nutrients that lyme robs from your body and the need to help your body rid itself of toxins. It sounds like you may need to work with an integrative doctor to work on detox before you start killing bacteria and adding to the trash heap. As your body gets stronger, you'll be better able to juggle these needs at the same time. But for now, detox without antibiotics or herbs meant to kill the lyme sound like a top priority. Given how seriously ill you sound, it doesn't sound like doing nothing is an option. I'd get with an integrative LLMD or naturopath and do some foundational work on methylation and detox and then proceed to lyme treatment.

I'm not going to say "don't worry" but if it were me, I wouldn't chase down additional specialists looking for cause until you give the lyme/ehrlichiosis treatment sufficient time and then re-test. IG levels, lymphocytes and thyroid could all be effected by chronic illness. So you may already be on your way to addressing these issues and seeing additional doctors may only cloud the picture because they likely won't factor in how your known infections are part of the equation. I get how this is distressing, but knowing the road ahead of you (having been on the same road), I'd personally stay on that path and see how labs change over time rather than adding additional docs and/or treatments into the picture at this point. JMO. Re: the Vit D - our LLMD and my naturopath both feel that everyone in New England should supplement year round with D3, except maybe for July/August provided you're out in the sun and not holed up in an office. Many people with chronic infection are going to be low on D and most New Englanders will be too. So if you're in both categories, it's pretty much a given.

I'm sorry your daughter has to endure this, but there might be a positive from all of it. There's nothing like having an outsider attack your family to make you face your own feelings about the same topic. In having to defend her brothers, it may help her to see their pont of view in a way she couldn't before. My son is reading a book called "The Thing About Georgie". Georgie is a dwarf who goes through childhood feeling sorry for himself because he has struggles that no one else does. He focuses on what he doesn't have. But then he slowly becomes friends with a girl who's hated by the class because she never pays attention, can't control her impulses, puts other people down (he finds out it's because she herself is always put down and it's a defense mechanism)...he comes to realize that other people have hidden disabilities and that their outward behaviors often hide the hurt and struggles on the inside. My son went through a pity party phase. He now realizes he's become exceptionally insightful for his age and can understand what makes people tick more than his peers. He now knows his best friend isn't ignoring everyone to be aloof - the friend has a low-tone hearing loss and is too worried about being teased, so he won't wear hearing aids (but will need them eventually). His other friend has had numerous endoscopes and GI issues, another classmate leaves early every Monday for therapy sessions for his "issues". Another girl in class has ODD. Because of his battles with lyme and Pandas etc, he's slowly starting to realize that EVERYONE has issues. What makes some people "better" people than others is HOW they deal with those issues, not that they don't have them to begin with. It sounds like this girl is embarrassed by everyone knowing her hardship and at being needy, which is probably not "cool". So her meanness may be a way to deflect her own insecurities, particularly if she's worried others will see her anxiety. It may be hard for your daughter to deal with, but it's a great insight into others and a way to talk about the best ways to handle this kind of insensitive disregard for others. Because unfortunately, its something she'll encounter again and again in life. Hopefully, you'll be able to find a way to turn it into a positive.

A herx is generally caused by the release of toxins - from the die off of bacteria. So for a herx, helping the body detox and rid itself of these toxins can be very helpful. Here's a recent thread on the topic http://www.latitudes.org/forums/index.php?showtopic=17155 best of luck on your public awareness efforts!

My DD7 had intrusive thoughts. She initially responded to abx and over time, her immune markers for chronic infection went way down (C3d immune complexes went from 20s to 50s to 90s and then 8 mos of abx - zith+bactrim - brought it back to the 20s last time we tested). We were never sure what type of infection she had. But the intrusive thoughts, the negative thoughts about herself stayed. ERP and CBT did help - and I strongly encourage you to stay with therapy - but make sure it's ERP and not just talk therapy. There should be exposures you're working on in the session and at home. The other thing that helped was looking at the way her body metabolized (i.e. methlyated) certain nutrients. An SSRI slows down the speed at which the neuron sucks up seratonin between the synapses. The seratonin between the synapses is like grease between ball bearings. Suck it up too quickly and the ball bearings scrape against each other instead of gliding. Thoughts gets stuck when there's not enough grease. But - and this is my opinion - using an SSRI assumes that there's enough seratonin in the system but that it's being sucked up too quickly. What if there isn't enough seratonin in the system to begin with? You can slow down the re-uptake, but you could have an underlying deficiency instead of or in addition to the too-rapid re-uptake. Dopamine is also critical to some of these neurological conditions. An SSRI doesn't address that part of the equation. I know my DD has an MTHFR mutation, so she doesn't process/metabolize/methylate folic acid into methylfolate, which is needed for the body to eventually make seratonin. So that's one strike against her. She's also a picky eater with poor nutrient intake. So she's not taking in the necessary ingredients. Strike two. She may have other genetic mutations that make her production of neurotransmitters less efficient. So maybe strike three. On the hunch she had a seratonin and/or dopamine deficiency, I started giving her tryptophan (a seratonin precursor) and tyrosine (a dopamine precursor). This bypasses some of her diet and genetic hurdles and puts more seratonin and dopamine into the system. I think if it as giving her turkey in pill form because she won't eat it in its natural form. (rationalization, I know). The transformation has been amazing. She rarely has intrusive thoughts now and relies only on ERP and CBT skills to face any anxiety that crops up briefly. I don't know how your therapist or neurologist would feel, but it might be worth discussing. Not necessarily in place of but maybe in addition to the prozac.

I'm glad she likes it! You may want to check out "Talking Back to OCD" for yourself. It really helped me shift my perspective and see my role in a different and helpful way.

I don't know who Dr J recommends, but I'm guessing it's Sandra Berenbaum http://www.lymefamilies.com/ But I think what you really need is someone versed in ER/P - for that, I'd go to http://www.ocfoundation.org and look for a therapist on their directory who's a BTTI graduate, which means they've been trained in ERP by the IOCDF. Your other option would be to send an email to the IOCDF and ask them to forward your email to Dr Jenike, who has become very familiar with PANS and its implications in therapy. He may know someone closer who could help.

Is your DD on a combo abx treatment for her lyme and co-infections? It sounds from your post that the abx has been intermittent. The ehrlichiosis/anaplasma can be awful and all of the infections you mention can cause imbalances in neurotransmitters that could lead to severe depression. It sounds like you may have a patchwork of doctors. Do you have one doctor who's aggressively treating the infections and giving you the guidance you need? Without that, I think it can get very confusing.

You tell her with absolute certainty that Linden got better and so will she. Last night, my son (9) and I were talking/'reminiscing' and he brought up how he used to be obsessed with doors (long story). He then went on to realize that he didn't have any obsessions anymore - no need for evenness, no need to control his environment, no need for special numbers or have things 'just right', no tics, no muscle pain, no brain fog...nothing. He has been sick since the age of 6, maybe longer. Last year at this time, he was miserable, feeling like the unluckiest kid on the planet because he had 3 diseases (Pandas, lyme and pyroluria). Last night, he was struck by how totally normal he feels now. Kids don't have the same sense of time adults do. They live in the Now. If they are sick, they think they've always been and always will be sick. If they're healthy, they tend to not remember how awful they once felt. So yes, it's heartbreaking when they feel despair. No child should feel that way. But as a parent, you can help reassure them that you know it won't always be the way it is today. That they have a future where they will be healthy and not have to see doctors all the time. It's really, really hard to feel optimism, but kids can - and do - get better. We all take individual paths to get there, but you have every reason to believe that your daughter will reach a point where all of this becomes a distant memory. She needs to know that you believe that. Because it's true.

Thank you ladies!! Wish you had more optimism but I appreciate the leads!

I have a friend (adult) who's struggling with Crohn's and needs to find an open-minded, curious doctor - preferably in the integrative realm. Does anyone in the Chicago area know of doctors who will look at a broader picture and ask a lot of "why's" instead of just reaching for a prescription pad? Maybe someone who'd consider LDN? Posting this on several forums - thanks

I have a friend (adult) who's struggling with Crohn's and needs to find an open-minded, curious doctor - preferably in the integrative realm. Does anyone in the Chicago area know of doctors who will look at a broader picture and ask a lot of "why's" instead of just reaching for a prescription pad? Maybe someone who'd consider LDN? Posting this on several forums - thanks

I have a friend (adult) who's struggling with Crohn's and needs to find an open-minded, curious doctor - preferably in the integrative realm. Does anyone in the Chicago area know of doctors who will look at a broader picture and ask a lot of "why's" instead of just reaching for a prescription pad? Maybe someone who'd consider LDN?

When I read the book (before watching the DVDs) it was only somewhat helpful. When I read it after I watched the DVD, it made a lot more sense. Together, they changed the way I viewed illness and this whole neuropsych mess. I'm not sure how closely this matches her DVD - I haven't watched this youtube video. But it's 90 min long and her DVD is 120 min, so it must cover a large bulk of the same material. It will get you started at any rate... http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1- Not everything she says is proven - some is theory. But it's a theory that makes a lot of sense to me.

I've not heard of many discuss hallucinations as a symptom. You may want to test for toxoplasmosis gondi. Here's a good article: http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/8873/. You might also find something useful in this book, as it talks about nutritional imbalances and mental illness http://books.google.com/books?id=OPtObJOJ76QC&pg=PA98&dq=pfeiffer+Nutrition+and+Mental+Illness+:+An+Orthomolecular+Approach+to+Balancing+Body+Chemistry.&hl=en&sa=X&ei=xesiT_2gCOLv0gHm8IjgCA&ved=0CEEQ6AEwAQ#v=onepage&q=pfeiffer%20Nutrition%20and%20Mental%20Illness%20%3A%20An%20Orthomolecular%20Approach%20to%20Balancing%20Body%20Chemistry.&f=false Finally, once the IVIG is far enough in the distance that you can resume blood work, you may want to test a few immune markers - like C3d, C4a, C3a - to see if the immune system is showing signs of being in overdrive, possibly indicating an ongoing infection (tho it won't tell you what sort of infection).

For general anxiety, I like Up and Down the Worry Hill and What to Do When You Worry Too Much. My kids liked the concept of worries being like tomato plants and knowing that if the worries grew or died was directly under their control (from WTDWY Worry Too Much). But what both my kids really liked was What to Do When Your Brain Gets Stuck - which goes over the steps you need to do for ERP. My DD, who doesn't have true compulsions - just obsessive worries - was 5 when we started reading it together. Every once in awhile when her worries get large again, she'll pull it out and review. It gave her tools for her tool box. Even tho it's for OCD, we adapted it to use against worries in general. You still go through the same steps - name your worry voice, catch it in the act, defy what it's telling you to do by doing the opposite, etc. It's still about taking baby steps and rewarding small accomplishments. So very adaptable for GAD, not just ERP - tho the first read thru you may need to help them see how it can be applied to GAD. If it's an older child, you might want to consider Talking Back to OCD by John March (here's a google books version http://books.google.com/books?id=WxXWOAkaRN4C&printsec=frontcover&dq=talking+back+to+OCD&hl=en&sa=X&ei=lPaPT724IoHX0QHV1d2SBQ&ved=0CDYQ6AEwAA#v=onepage&q=talking%20back%20to%20OCD&f=false I also liked Freeing Your Child from Anxiety - it helped me reframe my own view of the problem.

I rarely wine anymore but I'll bring the cheese (FWIW - I think 90% or more of the moms on the lyme forum come from or are still on the Pandas forum - we get it)

I think there are 3-4 moms on the lyme forum who'd tell you they felt the same way. The feet pain is a symptom of one of the co-infections - babesia maybe? Can't recall. But if you post this on the lyme forum, you'll get lots of feedback. I'm so sorry you're getting slammed. My arms aren't long enough but sending you much sympathy and cyberhugs.

It sounds like your doc has a good handle on things and isn't leaving it to you to grope your way thru. On the Sacc B - everything I've ever read has been positive. But the two times we've tried it, DS has struggled with erratic, yeast-like behaviors. Can't say for certain it's the Sacc B. But it improves when we stop the Sacc B, and there are plenty of other options, so I just don't go there anymore. I took it for a time and felt it made me bloated/gassy. Just isn't worth it for us, which is too bad, since it's more affordable than other probiotics. There are other natural anti-yeast things besides garlic - just can't think of them right now. You can google and find suggestions on the many yeast sites out there. Did your doc suggest anything? We used the ALA-max Cr for a time. DS felt it helped a little. But it got to be expensive as we added other supps, plus for a time we had metals on our radar and ALP chelates mercury, but it crosses the BBB, so if you have more mercury in the body than in the brain, the ALA could theoretically move the mercury from the higher concentration (the body) into the lower concentrated area (the brain). That's Andy Cutler's theory anyway. Not sure how much science there is to back him up, but it was enough to make me consider alternatives. But would consider it again now that metals aren't our concern - as it is a good anti-oxidant. I like quality resveratrol for this as well. We use Evening Primrose Oil as our Omega 6 (one of the anti-inflammatory types of 6) - so one more option for you. As for zinc - plasma blood tests are considered unreliable, even by mainstream medicine. Not just for zinc but other minerals and vitamins as well. My kids and I have a condition called pyroluria - our bodies make too many pyrolles (a waste byproduct of blood synthesis) and pyrolles stick to zinc and B6, taking these things with them when they're pee'd away. So our plasma levels look fine, but our bodies were still depleted because we pee'd the stuff away before the body could use it. It's tested thru a urine test with Doctor's Data. Because of the pyroluria, we need to mega-supplement in order to get just enough. When we did this (using Biopure Core as the supplement), we saw big improvements. I'd ask your doc about it. Just FYI - http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf

Garlic pills have worked well for my kids' yeast issues, in addition to probiotics. Also consider seasonal allergies as a trigger.

It sounds like you have good reason to look at this stuff. My biggest advice is GO SLOW. If you're going to start supplementing with methylfolate, think in terms of 200-500mcg to start (depending on weight). Very common for people with deficiencies to have short honeymoons and then "herx-like" responses, especially if you start too high. Think of starting a conveyor belt or treadmill. You don't jump on when it's already going 5mph. You start at a walk and speed up gradually. If it were me, I'd add a low dose of methylfolate. Then before increasing that, my next step a week or so later would be to add a low dose of tryptophan (like 150-200 mg), then a week or so later, add zinc (certain types are better absorbed), etc. You might also look at tyrosine in addition to tryptophan. It causes anxiety in some, but helps my kids a lot. Then once every missing piece was added a little bit, I'd go back to the methylfolate and increase each supplement a little bit again. You're better off having a little of everything than having "enough" of one thing but still be deficient in others. Adding zinc has had two effects on my kids. First, we had an awesome 3 week honeymoon. But then we went through a regression for a few weeks and we backed down the dose, then when things calmed down, we built back up. Second, for my daughter, who had high copper, the zinc is a natural chelator. High copper can cause bi-polar-ish behaviors. So we saw that worse-before-better thing before steady improvement. Adding something like charcoal (away from everything else) will help with binding toxins being excreted. I totally get the no yeast anxiety. I don't know how my family would handle it. But it's possible that after you get everything corrected, you may be able to add things back. It could be a sensitivity rather than a permanent allergy. You may want to ask about digestive enzymes that contain Dpp IV. We've found garlic pills to be a big help with gut yeast. My DS does poorly on Sacc Boulardis, which is a yeast probiotic. So remember to check what's in your probiotics. Gotta love biomed! We'd be stuck and lost without it. Changed everything for us. It sounds like Yasko's DVD and book "Autism: Pathways to Healing" might be a good reference to have on hand as you go through this. I recently posted some detox ideas as well - some things to ask your dr. Sounds like you have much to be hopeful about!