LNN

We haven't had issues with rifampin in and of itself. What I have noticed is that DS has a threshold of just how much abx he can tolerate in total. He's ok with 1 or 2 abx (for lyme). But at times when we've added an additional abx for a short time, I see yeast behaviors and loose stools. He's never had a problem with a particular abx (including rifampin) but has had problems when there's just too much assaulting his gut at any given time. (caveat - we have always supplemented with probiotics). Since you're doing the rifampin for a short time, it might not hurt to add a probiotic. It's not like you'll be adding an additional pill indefinitely (unless you happen to like what you see). But far easier to be proactive than to have to fight a yeast or c. diff problem after it's developed. BTW - rifampin is a little better absorbed on an empty stomach, so in a perfect world, I try to give it 30 min before a meal. But that rarely happens. I pass it along FWIW. Remember to give probiotics 2 hrs away from abx. Our doc likes to give it at bedtime so the probiotics can sit in the gut with less motility and also because stomach acids are at their lowest over night. One other thought - you can also fight yeast with garlic pills - they're very small, easy to swallow and no taste.

Not an area I've had to learn much about but I'll toss out two thoughts. One is skin damage - not skin cancer but just damage. The second is hormonal. I seem to recall something about estrogen causing spots - can't recall if that's something I read in my naive days of What to Expect When You're Expecting or somewhere else. But maybe see if puberty can trigger spots?

I'd call your LLMD and ask his opinion. The 5yo is probably ok since he's on doxy. Not sure about the 9 yo.

I'm sorry you're in this spot. But I wanted to reassure you that when you start to feel like Alice in Wonderland and the teachers look at you like you've lost your mind, try to shut that out. You're not insane. They're just uninformed. Don't waiver in what you know. When the teacher says "take him off meds, It can't get worse" - she's saying "make my job easier." It has nothing to do with whether the meds are making Aiden better or not. It can get worse and it was worse before you started this journey. You know that. Don't let her make you feel otherwise. You say this is making you remember what it was like before GFCF. Could yeast be a problem? I had a strange experience yesterday. My DD has her LLMD appt today, so yesterday I was updating her symptom chart. I bring the graph to every appt. For the past month, I've only been punching in numbers into Excel without looking at how that was changing the corresponding graph. When I looked yesterday, I saw a significant drop in behaviors about 3 weeks ago and went to my notes to see what was so magical about the week March 13th - the time of the change. "Start Garlic" was my note. I think Garlic has done two things for DD - stopped yeast and helped digestion - both of which seem to have improved her behaviors. Today, I'll be asking about digestive enzymes and such. So when I read your reference to GFCF, it makes me wonder about yeast and/or gut inflammation/digestion. Have you looked into TMG/Betaine at mealtime? As for your questions - #1 - The school shouldn't be involved in second guessing any medical decisions. That's why you pay a doctor who actually studies and practices this stuff. As for how much you share - I share next to nothing with my DDs school because they are just shy of hostile. I share a little with my DS's school because they seem more interested in helping but are still wary of the idea of long term abx. So I stop talking when I start to see the expressions on their faces change. They don't need to know the gory details. Their job is to educate the child in front of them, not give advice on treatments. You can try to explain that a medical condition will make his behaviors and abilities variable, but I personally avoid TMI. 2. Does your son have a dedicated assistant? is this a public school? Does he have an IEP? If so, you should be able to get him someone to shadow him and help avoid or manage physical outbursts. Yours certainly isn't the first to have this challenge and they shouldn't be making you feel like it's your job to figure it out. It's their. 3. As for advocates, you can contact Time for Lyme or Turn the Corner to see if they know of resources or you can go to Wright's Law website and in their yellow pages section, see if there any any advocates in your area. I do think even if you just had a consultation it would make you feel more sure of yourself.

I hear you. For short exposures, I have a stock of Avon SSS. But if we were campers, I'd probably opt for DEET. Here's a decent overview - doesn't seem overly biased one way or the other. http://emedicine.medscape.com/article/1088411-overview#showall Permethrin is also worth considering. It's also discussed in the above article.

Avon sells a repellent that's a sunscreen and tick repellent IR3535 http://shop.avon.com/shop/product.aspx?pf_id=7894 Nightly tick checks and run your fingers through the scalp several times. You are looking for something that may be the size of this period. They can be amazingly small. You may also want to get a tick removal device (here's a review and some general guidelines) http://www.biosci.ohio-state.edu/~acarolog/needham/tickgone.htm If you do find a tick, place it in a ziplock bag with a moist paper towel in case you need to test it. But like philamom said - enjoy yourself!

oops. My bad! Yes, an MTHFR mutation could result in elevated homocysteine.

Dr Ritchie Shoemaker feels that inflammation, not cholesterol, is the driver. That high cholesterol is a response to inflammation. You may want to browse his site http://www.survivingmold.com/ or his books. On the site is a list of inflammation tests he recommends. You might also want to do some research into zinc. One study has suggested zinc can increase your LDL (good cholesterol) http://www.livestrong.com/article/530227-zinc-hdl/ and other research suggests zinc deficiency could trigger anorexia. Also, one other thought is that the oxidative stress from increased anxiety could cause inflammation and an increase in cholesterol. So some type of antioxidant (milk thistle, resveratrol, alpha lipoic acid) might help. That could also be why an SSRI would have a positive impact?

I think steady dosing of ibuprofen for a week or two would be very insightful. You might also consider using Aleve in the morning before school, as it lasts thru the entire school day. Then you can dose with ibuprofen after school. If you are super concerned about the liver, you can research milk thistle, as it's a great liver antioxidant (do not use if there's a ragweed allergy and do look up medication contraindications - there are a few meds that do not go well with milk thistle). If Aleve isn't as effective, when you see Dr B, bring a school form so he can give the school nurse authorization to administer ibuprofen during the day. As for your marriage...Your DH has put up with a lot and is concerned about how you're being treated. He wants to protect you and shouldn't be made to feel like a villain for his views. Maybe he doesn't see things the way you do but his views are valid and should be considered. I'm not saying you shouldn't continue to fight for your son, but it doesn't have to be an either-or decision. Illness or not, our kids do need consequences for their behaviors. Perhaps doled out with understanding, but consequences nonetheless. Your safety needs to be a priority and DS needs to know there's a line he cannot cross. With a growing body and strength comes a greater responsibility for learning to control one's actions and words. My DH is generally very patient and has fully supported our journey. But he has needs too and the kids can't always be in the driver's seat. We have a strong marriage but it has its scars and we're needing to do repair work after so many years. Any chronic illness affects the whole family, not just one person. Everyone needs to feel there's a point where their needs take priority. Sometimes, inconveniently, that means the sick child has to suck it up, even at the risk of provoking a meltdown. You are probably looking at a long journey. Take time to find balance so that you can travel with the support of your spouse. He has legitimate (IMO) concerns and needs of his own. If you take time to consider those and listen, you may find an opportunity to strengthen your marriage instead of having to lose it. I don't mean to sound insensitive. My kids are my number one priority. But having been at this a long time, I know I couldn't have done as much if I'd had to do it as a single parent. Take some time to listen to what your DH has to say. Really listen. You might find that it helps you both.

The "stubborn sinus infection" and negative response to prednisone. I know Dr B feels that abx plus prednisone is helpful for sinus infections. His thinking is that as long as the sinuses are inflamed, they trap gunk that breeds bacteria and makes it harder for the abx to get the upper hand. But we had a similar experience to yours (not the same degree of anger but an unpleasant response) and like you, I pulled the prednisone after only a few days. My DS had great responses to prednisone before the incident I have in mind, so to me, prednisone wasn't appropriate for whatever we were dealing with at the time. Unlike you, my DS had been on augmentin and Dr B switched him to zith, thinking maybe the augmentin hadn't done the job. The switch made DS worse. So I went back to augmentin and things eventually calmed down. But to be perfectly honest, I'm not sure we were dealing with a sinus infection at all. DS was dx'd with lyme later that year. I know every doctor has abx they prefer. In my family, zith seems pretty ineffective for sinus issues. Amox works pretty well for us and if we need big guns, I ask for ceftin (which is wicked expensive so I ask sparingly). But if you're dealing with a sinus issue and not seeing improvements, I'd consider either a different abx or wonder if you were dealing with something other than a straight-forward sinus infection. Which is what made me think of Marcons.

There are two "schools" on lyme. One group follows treatment guidelines published by IDSA (Infectious Diseases Society of America). IDSA says treat only with one month of one abx and only if telltale signs of lyme are present (bullseye rash, CDC positive western blot etc). They do not believe in "chronic lyme". They have been investigated by the CT Atty General for conflict of interest. Unfortunately, most mainstream medicine follows these guidelines and you'll find it nearly impossible to find anyone in Florida who believes lyme would be a problem for you - especially in a hospital or ER setting. On the other side of the debate you have ILADS (Intl Lyme and Associated Diseases Society) which feels chronic lyme is very real and needs to be treated with a combination of therapies for a very long time. They support the idea that lyme can be contracted in any state in the country. You aren't going to change minds. Your best bet is to get with a doctor who follows ILADS guidelines. If it were me, I'd do three things: 1. Contact ILADS and ask them for referrals to doctors in your part of the country (be prepared to travel) 2. Go to www.lymenet.org to the "seeking doctors" section and ask for referrals from members 3. Make an appt with an LLMD and ask them to order this test: http://www.advanced-lab.com/spirochete.php It's pricey ($500+?) but you will never have to doubt yourself if it's positive. Or perhaps the LLMD will treat without the test and just based on clinical evidence. IMO, a hospital isn't going to be helpful.

Interesting recap of info. Thanks for posting!

There's a bacterial infection called MARCONS that you may want to research. MARCONS stands for "Multiply Antibiotic Resistant Coagulase Negative Staph". Here's an article that gives a brief overview http://ezinearticles.com/?Why-MARCONS-Prevent-You-From-Killing-Lyme-Bacteria-and-How-You-Can-Stop-Them&id=3662317 Ignore the references to lyme - not trying to suggest that. But you tend to only see MARCONS discussed on lyme forums, so it's hard to not get a discussion about the two at the same time. If you search on Shoemaker+MACRONS you can find additional info. There's a nasal spray that's pretty effective called "BEG" spray. I don't have personal experience with it, but many on the lyme forum do. I believe it's a prescription available from some compounding pharmacies. You can also try X-Clear or any other nasal spray that contains Xylitol (found in health food stores). Xylitol prevents bacteria fron adhering to the soft nasal and throat tissues and multiplying. Many gums also contain xylitol (tho that wouldn't reach nasal passages). The article above also makes reference to using a combo of common herbs like garlic and tumeric. Garlic also fights yeast and tumeric is anti-inflammatory. You can get garlic pills which are tasteless and small and pretty inexpensive. I get mine in the vitamin isle at the grocery store.

LLM -- I'm curious if you're finding any inflammatory issues in limiting Omega's to Omega 6? I remember reading (someone correct me if I'm wrong) that while Omega's 3 and 9 are anti-inflammatory, Omega 6 is thought to be pro-inflammatory? It's another one of those things I'm sure comes into the whole balance issue. And not to hijack this thread, but I'm becoming increasingly convinced my DS likely has some pyroluric tendencies, if not a full-on condition (since cutting his B-complex down to just B6 and adding more zinc, he's doing better and better behaviorally), but we've seen good things happen for him in the past with our heavy Omega 3/9 supplement, particularly when compared to periods in which we tried flax seed instead. I don't see any inflammatory issues with Omega 6s. We use primrose oil, which is GLA. From Univ of Maryland: Omega-6 fatty acids are considered essential fatty acids: They are necessary for human health but the body can' t make them -- you have to get them through food. Along with omega-3 fatty acids, omega-6 fatty acids play a crucial role in brain function, as well as normal growth and development. Also known as polyunsaturated fatty acids (PUFAs), they help stimulate skin and hair growth, maintain bone health, regulate metabolism, and maintain the reproductive system. There are several different types of omega-6 fatty acids, and not all promote inflammation. Most omega-6 fatty acids in the diet come from vegetable oils, such as linoleic acid (LA). Be careful not to confuse this with alpha-linolenic acid (ALA), an omega-3 fatty acid. Linoleic acid is converted to gamma-linolenic acid (GLA) in the body. It is then further broken down to arachidonic acid (AA). GLA is found in several plant based oils, including evening primrose oil (EPO), borage oil, and black currant seed oil. GLA may actually reduce inflammation. Much of the GLA taken as a supplement is converted to a substance called DGLA that fights inflammation. Having enough of certain nutrients in the body (including magnesium, zinc, and vitamins C, B3, and B6) helps promote the conversion of GLA to DGLA. We never really did Omega 3s. In the early Pandas days, the kids weren't able to swallow pills, so we tried the Gummies and they hated them. So I never fought that battle. Then when they were diagnosed with pyroluria, we started Primrose. So I don't have any comparison. However, a few months ago, I tried switching from 100% primrose to something that was a primrose+flaxseed blend and saw an immediate decline. But less than a week later, DS also got swollen glands with strep rampant in school. So hard to separate the two events. However, I'm not inclined to try it again. Sticking with EPO.

Curious about this comment. I totally get how you need them to face their anxiety and conquer it. But the extreme anxiety shown in the 20/20 ERP sessions seemed so so high. I couldn't imagine trying to make any progress with my kids if they were that high on the scale. So intuitively, it feels like helping them lower their anxiety with breathing or short acting relaxants in order to accomplish more in a session - wouldn't that be similar to the thinking of using both an SSRI and ERP to make the most progress? That sometimes a fear can be so strong that you need the help of a medication to start to take those baby steps? Wouldn't learning deep breathing be a type of "learning to control your emotions and reactions" akin to other CBT strategies? I get that ERP is a very specific type of CBT to extinguish the obsession and compulsions. Just not clear on why things to help you relax can't done along with it. Also thinking of how oxidative stress can change the brain chemistry and if that couldn't bring its own set of problems if allowed to skyrocket. Just trying to understand it all better.

EAMom - from Wiki - A single-nucleotide polymorphism (SNP, pronounced snip) is a DNA sequence variation occurring when a single nucleotide — A, T, C or G — in the genome differs between members of a biological species or paired chromosomes in an individual. For example, two sequenced DNA fragments from different individuals, AAGCCTA to AAGCTTA, contain a difference in a single nucleotide. In this case we say that there are two alleles: C and T. So the SNP is the letter that's different in someone who has a mutation (aka polymorphism) of the "norm" From http://ghr.nlm.nih.gov/gene/MTHFR The most well-studied polymorphism related to the risk of neural tube defects changes a single DNA building block (nucleotide) in the MTHFR gene. Specifically, it replaces the nucleotide cytosine with the nucleotide thymine at position 677 (written as 677C>T). This variant, which is relatively common in many populations worldwide, produces a form of methylenetetrahydrofolate reductase that has reduced activity at higher temperatures (thermolabile). People with the thermolabile form of the enzyme have increased levels of homocysteine in their blood. I'm not sure it has any more relevance in the Pandas community vs any other community. Estimates for the polymorphism put it at 8-18% of different populations. It's not a "cause". However, it can play a role in the body's reduced ability to make seratonin and/or dopamine because it interferes with efficient methylation. In that respect, it may be one of those predisposing factors to the neuropsych symptoms. It also plays a big role in increasing your risks for heart disease, strokes and macular degeneration. Like DUT says, there are many SNPs and polymorphisms that effect methylation as well as trans-sulfuration (detox) pathways and any number could be playing a role in our kids' struggles. What I find so fascinating about the whole topic is that is suggests that proper supplementation could build bridges over genetic problems and really reduce symptoms for the long term - on a very individual basis. And rather than being immunosuppressive, supplementation works with the body to move things in a direction it's inclined to move when in good health. In the same way Katherine and DUT have found good results with methylfolate, I've seen the same sort of goodness with zinc and B6, because that's where DS's biggest genetic issue has been. The whole topic, to me, holds so much promise.

Been a few months since I looked at this stuff, but Katherine, help refresh my memory. I recall reading that an MTHFR mutation reduced your ability to methylate folate but did not mean you couldn't methylate it at all. Particularly if you only had one polymorphism and not two. Do you have anything I could read to brush up on this again? We supplemented with methylfolate for 2 months and didn't see much change. Stopped that and instead added tryptophan to boost the SAMe side of the methylation cycle and have seen much bigger improvements. But will re-introduce the methylfolate if its a matter of not having any available without it as opposed to having less of it available. Thanks!

I came across this site and found it to be an interesting resource on gut issues. I'm looking into digestive enzymes and found some good info. You sort of have to wade around thru the site - no search bar ... but lots of good tidbits for those with GI issues. http://www.enzymestuff.com/digestion.htm

Wow, talk about a motivator to not let little OCD things slide. Made me lose my complacency about our ERP tools! Nancy - the one thing that struck me was watching those kids so jacked up during their exposures. The stress was sky high. I was wondering if you knew of anyone who looked at giving patients some sort of relaxant just prior to an exposure - like valerian root or 5-HTP - something fast acting and temporary. All I could think of was how much damage all that oxidative stress must be doing and how much harder it was to do an exposure when your coritsol, adrenalin et al was off the charts. Is any therapist advocating any type of relaxation or stress relief during an exposure?

My limited understanding is that some doctors have found that if you treat lyme without treating chronic viruses, it's much harder to get well. Some prefer to treat the viruses first. Personal observation - it seems that those who've been sick a long time or with severe symptoms tend to find they have more than one issue to deal with. So testing for chronic infections might give you some idea on how "complex" or "straightforward" your case is. Wouldn't be surprised to see mold questions raised at some point too. Not because everyone has this problem, but it's something to rule out or address as part of the process.

Yay!!!! So happy for you guys! To think that you could someday take all that money spent on treatment and use it for making many more happy memories....awesome!

My DD7 has had gut issues most of her life. Normal endoscope, negative for celiacs or ulcers or inflammation. Pepcid helped in the near term. 100mg Magnesium has helped with regularity, which is always a problem with poor diet. I'm now looking into something called Dipeptidyl peptidase- 4 peptides which play a huge role in breaking down casein and gluten. I don't think we could ever go GFCF but I'm looking into a urine test to see if she has any sort of deficit and if digestive enzymes might be helpful.

Agree with Nancy - one test looked for both. http://www.questdiagnostics.com/testcenter/OrderInfo.action?fn=36165.html&labCode=NEL&redirectFrom=search This is the test we had done and got results on both C677T and A1298C. I don't see where the description says it only tests for the C677? My DS had no polymorphisms. My DD had the C677T polymorphism, which is more "serious" in that it carries a higher risk of heart disease, stroke etc. It's treated by supplementing with methylfolate instead of the regular folate found in mutlivitamins. However, having the mutation doesn't mean you're deficient. You should still test folate levels. DD is actually high in folate and B12 and doesn't need more. The mutation just means your body is less efficient in converting folate into methylfolate. So DD converts maybe 60% of what she takes in. But apparently, she takes in quite a bit and doesn't need supplements. I think MommaKath's son had both polymorphisms but not sure. This has two implications - first if you have BOTH mutations, your body is even more inefficient and converts only maybe 30-40%? of the folate into methylfolate. So a need for supplementation could be greater. Second, the A1298 polymorphism effects the minor methylation pathway and is "corrected" by supplementing TMG/betaine (not to be confused the betaine HCL which is less effective). It plays a greater role in digestion than C677. You can check with Quest to confirm that the test measures both. After you get the results, you can post or PM me and I'll dig out my Yasko book and send you what she says about each. Or you can watch this 2 hr presentation - which I think both you and DH would enjoy...http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1- You might also want to check out Greenblatt's book http://www.jamesgreenblattmd.com/jgreenblatt-books.htm on zinc deficiencies. A quick and interesting read. I know DD has a zinc issue but the book also discusses genetic polymorphisms that make it difficult for a person to break down long chain fatty acids, making them gluten or casein sensitive (not necessarily intolerant). The result is an AN that comes from discomfort caused by eating. There's a urine test you can do to look for - will be asking our LLMD about it next week. Could help explain why my DD has always had a love/hate relationship with food.

Thanks Nancy! This is a great idea of something to pursue! She had the C677 MTHFR mutation, and family history of under-methylation issues and high homocystein (heart disease, stroke, macular degeneration). So I've always focused on issues of under rather than over methylation. And the success of adding tryptophan seemed to support that side of the equation. But despite the MTHFR, her B12 and folic acid were high when we checked in the fall. So maybe you're right - maybe the NAC overactivates. She's better now. Still needs the hall light on before she'll go upstairs alone, but she is going upstairs and has been playing by herself for 45 min. Two days ago, we had 30 minutes of drama and bribery just to get her to dash upstairs for 10 seconds to grab a stuffed animal. There does seem to be something unique about NAC for her. It must work on some neurotransmitter more so than tyrptophan or inositol and over-rev that one. Thanks for the thought - now I have something to google while I get stuck watching Nickelodeon's Kids' Choice Awards tonight!

I was looking up ways to fight mold in the washing machine and came across this: http://www.secretofthieves.com/index.cfm Mold expert stumbles upon an amazingly powerful and non-toxic method of toxic mold removal...in his wife's aromatherapy kit In 2005, Edward Close, PhD, a mold remediation consultant with 30 years experience in the environmental industry, was asked to do third-party sampling for mold in an apartment complex that had been flooded, evacuated, and later put up for sale. The buyer who was renovating the apartments had paid a company which had used the strongest stuff they knew of—a hospital disinfectant. Yet Dr Close's sampling showed that either the product had not killed the mold or that the mold had already re-established itself. After much urging by his wife, he diffused Thieves oil in the apartments for a 24-hour period. The research project yielded astonishing results! And two weeks later they were even more astonishing! (graph) In another instance, 10,667 stachybotrys mold spores were identified in a per cubic meter area. After diffusing Thieves essential oil for 48 hours, Dr Close retested. Only thirteen stachybotrys remained. Similarly, 75,000 stachybotrys mold spores were identified in a sample of sheetrock. After 72 hours of diffusing, no stachybotrys mold spores remained. Obviously a bit of an infomercial and the stuff is expensive $32/bottle and $200 for a diffuser if you wanted to do a whole room, which seems to be some sort of nebulizer/fan thing. So I'm not reaching for the credit card, but was curious if anyone had come across these sorts of oils (not necessarily this brand) in their mold research. Might be worth putting a few drops of something in a load of laundry or using it in a spray bottle in the bathroom if it worked?