LNN

I've not seen anything higher than 300 mg, so I can't really advise on 600mg. My kids and I take (1) 300mg capsule each at dinner. I don't think time of day matters. Milk thistle helps clear toxins and can change the way your liver metabolizes certain drugs. In some cases, it slows down the metabolism and therefore you can end up with a greater concentration of a medication than intended and in other cases, it could speed up the metabolism of a drug and you could end up with too little. Most of the antibiotics I've looked at in conjunction with MT end up in the former category, so you end up with a bit more abx in the system. But to be safe, google your particular list of meds + milk thistle to check. We take ours at the same time as abx, but if you were concerned, you could take it at the same times as probiotics instead. From Univ of MD http://www.umm.edu/altmed/articles/milk-thistle-000266.htm Several scientific studies suggest that substances in milk thistle (especially a flavonoid called silymarin) protect the liver from toxins, including certain drugs such as acetaminophen (Tylenol), which can cause liver damage in high doses. Silymarin has antioxidant and anti-inflammatory properties, and it may help the liver repair itself by growing new cells. Possible Interactions: If you are being treated with any of the following medications, you should not use milk thistle without first talking to your health care provider. Antipsychotics -- includes butyrophenones (such as haloperidol) and phenothiazines (such as chlorpromazine, fluphenazine, and promethazine) Phenytoin(Dilantin) -- a medication used for seizures Halothane -- a medication used during general anesthesia Birth control pills or hormone replacement therapy Milk thistle may interfere with the following medications, because both milk thistle and these medications are broken down by the same liver enzymes: Allergy drugs -- such as fexofenadine (Allegra) Drugs for high cholesterol -- including statins such as lovastatin (Mevacor, Altocor) Antianxiety drugs -- including alprazolam (Xanax), diazepam (Valium), and lorazepam (Ativan) Antiplatelet and anticoagulant drugs (blood thinners) -- including clopidogrel (Plavix) and warfarin (Coumadin) Some cancer drugs Drugs broken down by the liver -- because milk thistle works on the liver, it may affect drugs broken down by the liver, of which there are many. Speak with your health care provider. Again - the word "interfere" means that it can either speed up or slow down the metabolism of these drugs. So it's not necessarily that milk thistle makes them not work at all, but rather that the dosing ends up being "off" one way or the other.

Google Bell's Palsy + Lyme http://www.livestrong.com/article/127719-common-symptoms-bells-palsy-lyme/ Others here have discussed some of the other symptoms you've mentioned and hopefully they'll reply. I don't have any direct experience.

Yes, and it also decreases/interferes with the body's response to the vaccine, lessening the effectiveness. PS - Congratulations to you and your family, Peg!

Just a personal opinion, but until the mycoplasma is gone, IVIG will not give you the success it might give you if DD was/is infection-free. Augmentin is not the abx of choice for mycop. Here's a background article FWIW http://www.morgellons-uk.net/?p=467

Dr L, and most LLMDs, ask you to pay for the visit at the time of the visit. They then give you the insurance form to submit on your own. In most cases, your insurance co. applies their "approved" rate to your deductible. So if the office visit is $200, you pay $200 to the doctor. You then submit your claim and the ins. co. says "we'll approve $160 for this visit". They then apply the $160 toward your deductible. Once you meet the deductible, you'd be reimbursed the $160 (or maybe 80% of that) and be out of pocket the $40. The reason these docs do this is that they typically spend twice the time with a patient that the insurance co.s think is "necessary". So the insurance co. says "we'll pay for a 30 min visit." But Dr L spends an hour with you. So she's not going to get into a fight with the insurance co. about all that. She understandably wants to be reimbursed for a full hour of her time. It's a fairly common practice in the lyme and autism worlds for this very reason. In order to give patients the face time needed, the doctors need to avoid being seriously discounted by insurance companies. It's easy to get frustrated with the doctors, but it's very reassuring to be able to sit with a doctor and not feel rushed out the door. You finally feel heard and often get the treatment you can't get elsewhere. So it sometimes comes down to a penny-wise/pound foolish situation if you limit yourself to in-network doctors (not to be insensitive to financial realities - I get that sometimes there just isnt' enough money in the bank). Just trying to explain the reasoning behind the situation. For LLMDs, you can go to lymenet.org to their "seeking a doctor" forum and get recommendations or you can ask on the ACN lyme forum. I do have several names of LLMDs in New England but none take insurance. While you're recuperating, you may want to read Cure Unknown by Pam Weintraub. It's a fascinating read about the complexity and politics of lyme.

I'm going to play devil's advocate for a moment - keep in mind my DS was a huge ticcer, with only sub-clinical OCD most of the time. So I have complete understanding of those in the tic camp. But...it's been almost 20 years since Pandas was proposed. In those 20 years, the major obstacle has come from the TS researchers. For 20 years, this politically and ego-motivated stonewalling has hurt every single kid who has/had/will have Pandas. Let's say that's 100 kids a year, or 2,000 kids in the past 20 yrs. (I know it's probably 10x more but let's keep the math simple). Maybe 20% of those kids had belligerent parents who fought and clawed and got treatment, sometimes years after onset because it took us that long to find doctors across the country when local docs turned us away. So 400 kids got treated, 1600 didn't. Let's say this new proposal widens the net to include non-strep triggers - like viruses, lyme, mycoplasma, all the things we regularly talk about. So maybe 500 kids a year get captured in the new net. And let's say since the naysayers don't have their territory on the line, that they back away. So 500 x 20 years = 10,000 kids get helped, vs. 400. Yes, those kids with tics still have to pray they have belligerent parents able to travel. But right now, we rely on a half dozen doctors in the country. If a new definition allows us to have doctors in every state, with more research money spent on answers instead of pi**ing matches, and Pandas becomes accepted, two things happen...First, many more kids get help. Second, once the disease is accepted, better researched, with more widespread clinical evidence that kids respond to abx...then you can expand the definition to include tics (because many diagnosed kids are going to have tics in addition to their other symptoms). I'm not saying tic kids are less important or should be sacrificed for the greater good. But we're all getting nowhere together under the current parameters. Better to get some kids treated and break down closed minds, open avenues of treatment and research, and let them pave the way for the ticcers, rather than insist that tics be included and prevent everyone from moving forward. Same argument I think applies to sudden onset. A large number of kids do have sudden onset. There has to be something that sets this label apart from traditional OCD. Maybe you miss the sudden onset, but I think between the number of people who can recall the day it happened plus the people who can look back and say "well, in hindsight, things changed when he got sick in first grade" - you capture a large percentage of people with the disease. I don't mean to offend or hurt anyone who falls outside the new parameters. But from a practical perspective, I'd rather see a lot of kids be able to move forward than be held back for another decade arguing about tics, even as a mom of a ticcer.

Infections can deplete several nutrients - D, magnesium and zinc are biggies. I've seen all 3 linked to constipation. Magnesium supplements can aid "transit" time and move stools along faster so they remain soft and lessen the chance of constipation. (200 mg for a child, 400 mg for an adult). That's why Milk of Magnesia works for constipation. Dairy can be binding. Not suggesting you eliminate it from diet - only that ironically, certain sources of D contribute toward constipation. The typical multi doesn't contain near enough D3. RDA levels are Minimum suggested levels and presume a balanced, very healthy diet and no infections or unusual drain on the body's normal supply of nutrients. It also doesn't consider the seasonal impact of lack of sunshine or raise any issues of things that can interfere with absorption (certain abx can block absorption of various nutrients - something to look into). FWIW - took my DD to a pediatric GI and it was a big waste. They didn't do any vitamin/mineral blood work, went straight to an endoscope (which found nothing) and shrugged. Told me to give DD pepcid and come back in 6 months. We then went to an integrative osteopath who tested for/added D3, specific probiotics and worked with me to find correct doses of magnesium and zinc supplementation. Gerd is gone, constipation is gone, yeast issues are gone, D deficiency is gone and levels are now normal (after supplementing with 2000 IU daily thru the winter).

Go to Helpful Threads and under #4 I've linked to three explanations of WB bands. 30 seems to be an antibody to OSPA outer protein, which is found on lyme spirochetes but not exclusively lyme.

Dr B can order a Bartonella test thru Specialty Labs (a division of Quest - make sure they run it thru Specialty and not one of their other labs) or thru the Igenex co-infection panel (but this is far more expensive). Like other lyme tests, when you are looking for antibodies, there are reasons why the test results may not be reliable. Many LLMDs (lyme literate MDs) treat based on clinical symptoms, the same way pandas doctors do, using lab results to support a diagnosis, but a negative lab does not rule out the diagnosis. Yes, you are Alice in Wonderland and nothing is simple or as it appears to the outside world. But you've been in this world for years, so now you've just fund a bunch of other nutty moms who live here with you. Like DCMom said, you ultimately need to exhaust yourself (post-surgery - you need to take care of yourself first) and learn as much as you can about a variety of possible culprits. Assume you are dealing with more than one culprit but that you will focus on removing one layer at a time. I started out on the Pandas path and then pursued lyme and bartonella and then nutritional support. In hindsight, I'd have done it in the opposite order. But DS is much better despite my backwards approach. DS still has Pandas - flaired with a strep issue last month. But recovered much faster and it was only a 2 on the scale vs. the 9s and 10s of years past. It's a process. You have a lot on your plate. Focus on making things bearable for the moment. You are in the process of learning, testing, and sorting out your team. The team may change over time. IMO, Dr B gets many points for testing for lyme but his expertise is in other areas and an LLMD can help more if this is where your journey takes you. Take it one step at a time and stay focused on accomplishments, not on how much more is ahead. We will all throw ideas out at you, trying to be helpful. Put the ideas on sticky notes in a notebook. Look at the ones that are easier to treat (e.g. yeast, diet) and the ones that pack the biggest bang for the buck (CBT/ERP therapy is huge, IMO and can yield life long benefits as well as saving short term sanity, marriages, jobs and wrinkles). Stick with the abx treatment, even if you end up needing something more - like combo abx - it will probably help if some sort of chronic infection is involved. Baby steps...

You know, E, sometimes we see things from opposite ends of the buffet table and sometimes we're right there should to shoulder. Totally agree with you on these points!

No, you didn't misspeak. I misread. I went back and edited my post. Mea Culpa. I forgot that bartonella was on your radar. Given the cat and your son's rages, I'd keep it on the radar. If it's a factor, one antibiotic may not be sufficient and prednisone would not be advised. Like DCmom suggests, a month of abx therapy alone may have given you more information before confusing the issue with prednisone. But different doctors have different protocols. If you're told to discontinue the prednisone, I would not be disheartened. It doesn't rule out Pandas. In most chronic illnesses, tests offer clues more than they offer proof. So I add a third item to my above list - bartonella. Here's an article you might find helpful. http://www.benbrew.com/lb/lb.html Read it carefully - the author (who is not a doctor) sometimes jumps from talking about lyme (abbreviated Bb for Borrelia burgdorferi, aka lyme disease) and talking about bartonella. Often in the same paragraph. One minute he's talking about Bb and the next sentence he says something about bartonella. So you may need to read it a second time, paying attention to which infection he's talking about in that moment. It's technically accurate but confusing. Parts are very informative, others not so much. But it's one of the more comprehensive articles I've come across. Pay particular attention to the section of how it effects relationships. I found it to be very true (my DS had a bartonella dx and was treated with azith+bactrim for 9 months).

I had two thoughts - steroids and yeast. First, like DCmom, steroids have worked miracles for my DS twice during bad flairs. But they have also had the opposite effect twice when we tried them at a time that inflammation wasn't the driving force behind the behaviors. Everyone is different, but for my DS, prednisone has had an immediate calming effect when he's needed it. It has made him edgy and belligerent when he didn't need it. I now know the difference pretty quickly and when we recently tried steroids and got PMS symptoms, we stopped after 3 days and he felt much better. So it's a tough call. I put it out there as something to consider but can't tell you what to do about it. (sorry). Second, when we recently tried steroids and didn't see success, I turned my attention to yeast. DS has been on multiple abx over the past 3 years but due to a strep issue in feb, we added an additional abx that may have tipped his gut balance. Then, thinking I was doing a good thing, I added Saccharomyces boulardii - a yeast probiotic - to protect his gut but for him, it may have been a bad thing. I started seeing agitation, inappropriate behaviors and language, defiance out of the blue (out of character and he later felt remorse), confusion, anxiety. A lot of yeast symptoms overlap with Pandas symptoms. Very hard to tell them apart. So now, I've stopped the extra abx, stopped the Sacc B and have started garlic - a yeast killer. I'm seeing an uptick in some things but that would be expected during a yeast die-off and I wont know if I'm on the right track for another week or so. In the meantime, steady dosing of Aleve and Motrin (which you should NOT give while on steroids). So I realize I have no definite answers for you and am just muddying the waters. Wish I was more helpful. But I just wanted to say that it's a complicated thing to sort out and an adverse response can have several causes. FWIW, any therapist who advises against "chasing this" but would rather subject your son to a second hospitalization and additional psych meds is not someone I'd want on my team. You need someone who will be curious and willing to look at many possibilities.

The missing link for both of my kids, when they didn't get completely well with standard Pandas protocols, ended up being nutritional deficiencies. DS has pyroluria, a zinc/B6 deficiency that compromises the immune system and body's ability to eliminate toxins, esp. neurotoxins. DD has mild pyroluria but her issues seem to be around methylation and gut. She's responding to tryptophan (supplements the seratonin side of methylation) and zinc and digestive support. It's possible seeing NIH specialists could get you further. But another option, closer to home, would be to meet with a naturopath, osteopath or DAN! to see if looking at the input side of the equation (i.e. the nutrients going into and being absorbed by the body - or the environment) is part of your puzzle. Also, not sure if 2 weeks is long enough to treat myco. Might be worth further investigation. Here's a background article that might help http://www.morgellons-uk.net/?p=467. Toxins can also contribute to chronic inflammation, so check for that as well. Here's an article on the impact of toxins. It's lyme-centered but would apply to mycoplasma as well http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html Just food for thought. If your docs are frustrated and willing to look broader, these articles suggest some other things to test.

Ticks need hydration. That's why you should put any clothes that might be harboring ticks into the dryer on high heat. They shrink up like raisins. So a beach, which offers no shade and high heat, would be deadly for them. Now, sea oats and dune grasses might be a different story. But a white, sandy beach, I think, is fairly tick free.

Ticks need hydration. That's why you should put any clothes that might be harboring ticks into the dryer on high heat. They shrink up like raisins. So a beach, which offers no shade and high heat, would be deadly for them. Now, sea oats and dune grasses might be a different story. But a white, sandy beach, I think, is fairly tick free.

I was thinking the same thing. In New England, most people are low on D in the winter - even my very conventional PCP checks my levels at my annual winter physical. Both our LLMD and my naturopath suggest winter supplementing at 2000 IUs. As for the pale skin, again - the meaning is influenced by where you live. Pale color generally means red blood cells are not as red and robust as they should be. But what's missing isn't one universal answer. Could be D, could be iron, could be zinc or other important nutrients. Allergies can also lead to pale color b/c histamine makes the skin swell and turn paler, esp. near the sinuses and eyes. One thing I've read in multiple places is that some blood tests - like zinc, magnesium et al - aren't particularly reliable because they don't reflect what's inside the cell, only what's in the surrounding plasma. That you can have a cellular deficiency despite an ok level in the plasma. Don't know how accurate this is or the science behind it, but I pass it along FWIW.

Do you give her one 500mg pill daily of garlic? I read it should be taken with food to avoid GI upset and flatulence? Yes, 1 pill for both DD and DS at dinner. DD has been taking for about 10 days and no side effects, small but noticeable improvement in appetite. DS has been taking it for 4 days and I'm seeing a flair of defiance, confusion, anger and brain fog. Prior to starting the garlic, he'd been very hyper and silly and inappropriate and was taking Sacc B for about a month. It made me start thinking about yeast. So we stopped the Sacc B and saw some improvement (this is our 2nd trial with it, it just doesn't seem to agree with him). Now wondering/hoping this bad spell is just a yeast die-off from the garlic. Will push ahead until the end of the month and see where we're at with him. I think JAG saw something similar when they were treating for yeast. Hoping she'll chime in with her cheerleading pom poms and give me the encouragement to push thru.

I use Naturapel. Used to be able to get it at Big Y grocery stores but had trouble finding it last summer. You can get it on Amazon http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=naturapel&x=0&y=0 But like all bug sprays, it only works if you put it on. My biggest problem is when the kids dash out the door when a friend comes calling and I don't get a chance to fumigate them before they vanish.

Hoping someone has input on the glutamine, as I have the same question. As for quercetin, the kids and I take it for allergies all spring. I like it because it has no side effects (no drowsiness, no irritability) and works well for allergies but the downside is we have to take one (600mg) every 4 hrs. On bad days, particularly in May when the Beech Trees bloom, we resort to zyrtec. But we don't use it for gut. As an aside, DD started taking 500mg garlic last week as a yeast preventative. Garlic apparently increases bile production, aiding digestion and she's eating a bit more now. Nothing huge, but an improvement nonetheless. The garlic pill has no taste and is very small.

Just watched the trailer - looks good http://www.indiegogo.com/THE-GREATER-GOOD-MOVIE Also, there's a matching gift of up to $75,000 for donations rec'd by April 19. Info is to the right of the video on the above site. Jill, do you know if it will be available to watch online (for those of us who are relishing the summer weather and may not be house bound on Saturday?)

There is disagreement even among us old timers on this one. First, I think it's important to realize that there are many variations of gut issues, so what works or doesn't work for one doesn't translate to be true for everyone. Scientists have discovered at least 3 gut "types" akin to blood types http://www.nytimes.com/2011/04/21/science/21gut.html This site gives a good overview of the benefits of S Thermopolis and other probiotics http://probiotic.org/streptococcus-thermophilus.htm and structurally, it seems quite different than the strep that plagues our kids. My kids have never had issues with S Thermopolis and their eating it seems to have no correlation with their moods. But others feel it's better safe than sorry. Some have great success with Sacc. Boulardi, which is a yeast probiotic and can therefore be given at the same time as antibiotics. My son seems to struggle more whenever we've added Sacc B to our mix. So I no longer use it. There doesn't seem to be a ton of research on probiotics in general and certainly not on how a particular strain effects a PANS kid. I think it's highly individual and you either have to trust your gut or experiment on this one. It's been fine for us.

I've had this talk about "what to tell your kids/not tell them" with several parents. Do you tell them what Pandas is? Will that make them paranoid? What about lyme? You don't want them thinking of themselves as chronically ill...It's a delicate balance between feeding into fears that could explode vs. informing them and helping them become play a role in their own well being. I've tended to err on the side of TMI. It comes with it's own set of challenges. But it also helps him understand what's happening and become responsible for choices - it keeps me from being the over-protective, overly restrictive parent. Yesterday, I met with the school psychologist to discuss some teacher-based school avoidance (he hates his class this year) and I asked for details so we could do some CBT. At the end, it came down to a personality conflict that we probably can't do much about. (I don't care for the teacher either). So I told her I'd end up bribing him - points for every day he completes the school day, resulting in a Game Stop gift card if he goes a month without absence and trip to Six Flags if he makes it thru the rest of the year. The psychologist said "careful. He's bright. He'll see thru your tricks." To which I said "I know he's bright. I gave up trying to trick him a long time ago. Now I just lay out the facts and make him part of the solution, with a pay check tossed in sometimes to reward him for doing the right/necessary thing". He was very excited to hear the plan and went to school this morning with not one complaint of "not feeling well". So we both get something out of the deal. It does suck that they can't enjoy the carefree, barefoot summers we all remember. But they can enjoy pools and beaches and time spent with friends and family and in that sense, their memories will be just as rich as ours. Gosh, I'm feeling serene and philosophical this morning. Think I need a cup of coffee too!

We use an integrative doctor. He can prescribe antibiotics as needed but it also well versed in complimentary medicine, supplements, herbs and "whole body" perspectives, particularly the link between the gut and brain, much the way a naturopath is. DAN! (Defeat Autism Now!) doctors also share this ability to have one foot in both conventional and naturopathic worlds and many treat PANS kids, not just kids on the autism spectrum.

We use the Avon SSS too. Here are their products: http://shop.avon.com/shop/search.aspx?find_spec=bug&search.x=0&search.y=0&department=search The Environmental working group doesn't like this product but it's unclear why - maybe because it doesn't protect against UVA damage, only UVB. EWG also doesn't like aerosol sprays because of the risk you'll inhale any chemicals in the product you're using. They prefer lotions. But I need to balance the risks of lyme disease against other concerns. We use the lotion SSS with IR3535, which is a good tick repellent, because the kids' tick exposure is likely to come during the daytime when we're at the park or by the stream. So the sunscreen product makes the most sense for us. It unfortunately isn't a mosquito repellent, so we use another deet-free plant based repellent for evening outdoor activities. No single, easy solution, I'm afraid. And you have to remember that ticks can easily fall into your hair from a tree or rolling in the grass and you probably aren't going to put suncreen on their hair and maybe not even bug spray. So you still need to do nightly tick checks in shower/tub, including the scalp. That said, you can't live in complete isolation and fear. Mosquitoes carry West Nile and a mosquito can find its way into your house no matter how well you protect yourself when you're outdoors. It's about finding balance.

Good link. I only wish it were available now!