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Posts posted by LNN

  1. Here's an article on C3a and C4a as they relate to lyme and mold. http://www.jacemedical.com/articles/C4a%20C3a%20testing%20for%20Lyme%20disease.pdf


    High C3a indicates lyme, high C4a can indicate mold. But according to Shoemaker and my LLMD, you need to run the test thru Jewish Laboratories - now a division of Quest. Only this lab provides measurements Shoemaker considers meaningful. Other labs, even those within the Quest family, don't give you comparable measurements. We went to Quest in Dec and they sent it to the wrong lab. Had to re-run in Jan and go thru hoops to get it done right.


    As for the pain - is there joint swelling? Swollen lymph nodes? My son's pain was lyme related. But other issues including mold can also cause pain.

  2. The sudden onset and the improvement on zith does seem like a good reason to look further into PANS.


    For Pandas, there are reasons you can have a negative strep culture - did they get a good sample? could strep be in the sinuses or ear canals? There are reasons you can have normal titers - some kids with weaker immune systems don't produce high titers. Also, titers rise and fall - if you test at the wrong time, you can miss the peak and get a "normal" level. At the top of the forum, you'll see an ad for a Pandas e-booklet that might help with the basics.


    PANS can be triggered by different infections - mycoplasma, lyme disease and other tick-borne diseases, viruses like epstein-barr, 5ths disease, hand/foot/mouth disease, HHV viruses...it can also be triggered by mold toxins.


    If you want to post the general region of the country where you live, people might be able to suggest a PANS-friendly and/or integrative doctor who's more likely to help you look for various triggers.

  3. Just so you don't freak ay how long it can take to get rid of chronic lyme...everyone's story is different. My LLMD told me his average time to get a patient well is about 1.5 yrs. It took my son longer because, like SFMom, we found additional hurdles. We had some mold that was holding him back and he had a condition called pyroluria (a zinc/B6 deficiency). Once we dealt with those, he made much better progress. So prepare yourself for a long journey - it's especially hard in the first year. But you do see progress along the way.


    I think if you have nothing but lyme going on, Dr J is a fine choice - a number of forum members have seen him and he's extremely well respected in the lyme community. But if you have other challenges - mold, nutritional/methylation issues, etc - then an integrative LLMD might be more helpful. My understanding is that Dr J doesn't use detox aids or look at other issues. Rowingmom is in Canada and is very lyme literate. You might PM her to get some referrals and options.

  4. My LLMD suggested it to us. I'd never heard of it before last year. He already had a relationship with the lab and uses it pretty regularly. So everything was in place prior to his suggesting the test to us.


    I don't know about the additional cost for an explanation. The report comes in two parts - one that's all text and one that's all graphs. So whether you're a visual person or need things in words, the total report is pretty easy to interpret. Yes, my doc helped interpret the first time we ran it but I'd have figured it out myself without paying an additional $130. You might want to call the co. and ask about pricing options. The first time I got an EOB telling me I was on the hook for $$$ I freaked. I called Spectracell and they rep reassured me I'd paid all I needed to pay and walked me thru the payment plan. From this thread, they seem to have multiple pricing plans. It's a good test, but probably not the only one around. After your MTHFR fiasco, I'd make sure you had some reassurances beforehand.

  5. I lean toward picolinate form - tho you can find articles supporting both forms. I love Biopure's Core - DS does far better on it than on any other source (but he is strongly + for pyroluria, so that probably plays a role in his response, as he needs all the additional minerals in Core). The B6 is important for everyone - major player in the transsulfuration pathway and in detox/glutathione production. But enough is as good as a feast so try to stay with supps that don't go overboard on dosages hundreds of times greater than RDA.


    Every few months, we do a "zinc challenge" - take 10ml of liquid zinc (from amazon). If it has a strong metallic taste, you're good in the zinc dept. If it has no taste, you likely have a pretty decent deficiency. i use that to judge whether each of us is at the right dose and then at least once a year we do a spectracell test to check levels of various nutrients.


    Without school to use as a barometer, you can ask him about his dreams. Those w/low zinc don't recall dreams as well as those who are plentiful in ziinc. For DS, we noticed he also got subtle humor quicker when he had the right amt of zinc.

  6. It was a no-go for both of my kids. DD can't handle the sulfur in Enhansa and it made DS rage. DS was only mildly cranky the first week at 1/2 dose, then was unbearable in the first day at full dose. He couldnt even stand to be in the same room with himself (which is how the rest of us felt too). Thankfully, it wore off quickly and he was much better the next day after we stopped. Yet I know it works wonders for many. For us, we stick with ibuprofen as needed.


    Smarty - check your inbox - sent you a PM

  7. Pr40 - fwiw, three in my family are CBS heterozygous and all of us have degrees of sulfur intolerance. For us it's a matter of quantity and duration. We can handle small spikes of it or short-term doses of a medication. But over time, as I mentioned in my liver panel results, we see consequences. I don't think you can say that just because someone is homozygous, they won't be affected. It's something someone needs to be aware of and determine their own particular tolerances. For me, it's something I definitely need to limit.

  8. kt - the things susie lists are called snps (snips) and they represent mutations of one particular gene called CBS. Your CBS gene is one of about 30 genes involved in a process called methylation - our methylation cycle fires every second of our lives and it impacts many aspects of health. But for our kids, it's important because these 30 genes work together to create and balance neurotransmitters. You can order a spit test from a company called 23andMe for $99 (no dr order required) and they give you info on 990,000 snps of your genes - not just the ones involved in methylation. You can go to the pinned threads at the top of the forum and find a long post from me with links that will help you learn more about the topic.


    Susie - there are two parts to your question. First, having a mutation doesn't automatically mean that mutation is expressing itself. It only means it's possible. In today's world, there's no test to say whether the snp is expressing. Instead, you look at clinic evidence. The two bad things that happen when you have a CBS mutation that's expressing is that 1) you can't tolerate sulfurs as well. When you eat protein or ingest sulfur medications/supplements/foods, your body has to convert that sulfur into a less damaging sulfite. Having a CBS mutation reduces your ability to do this. The CBS cog of methylation also produces an ammonia byproduct. Having a mutation reduces your ability to handle that ammonia.


    So how can you tell? The easiest way is to buy urine test strips and test your urine. You may also notice that your urine has a strong odor to it, something a little reminiscent of that ammonia smell that comes from a full can of wet diapers. The odor will get stronger after you've had a meal high in protein or sulfur. Another sign that you have a CBS issue is if you have negative reactions to sulfur drugs or foods or supplements. I took NAC for a few months last year, before I knew I was CBS +/-. My liver panel - AST and ALT levels - rose well above normal. I couldn't neutralize the high level of sulfur in the NAC. I stopped taking it and my liver panel dropped to normal. NAC makes my CBS +/- DD very angry and edgy.


    You can more complete info here http://www.heartfixer.com/AMRI-Nutrigenomics.htm and this "methylation for dummies" written by one of Yasko's students: http://autismnti.com/images/Website-_Yasko_Education.pdf


    One word of caution tho - both Yasko and the Dr who wrote the heartfixer document I just linked both make recommendations about various supplements to use or avoid based on your genetics. Always, always do your own research on these supplements. For example, you'll see Yucca touted as a great supplement for CBS issues. Yet, Yucca is estrogenic, meaning it can raise your levels of estrogen. For a perimenopausal woman or a girl approaching puberty or even a boy, I'm not comfortable messing with estrogen levels. So I won't use Yucca. Yet molybdenum, which is recommended for ammonia levels, has been great for my family. But I only started using it once I'd done my own research on it and added in slowly. Be a skeptic and do your own research. There is no one-size-fits-all answer for this stuff.


    LLM, I am very interested in this for several reasons, but not sure where to start or proceed.


    First- would the 23andme test indicate the gene re: mold?? It might - but I don't know how to find it. I know it tests some of the HLA genes but you'd need to know the snp RS id# and I don't know the Id# for the particular gene mutation we tested for. Dr M. ran our test thru labcorp - insurance covered it.


    I've been considering doing this test anyway to test for MTHFR but quite frankly, I'm not in any position to spend a penny more than I have to for anything at this point, and it would seem to me like the MTHFR is going to be an unlikely suspect in what's been happening with dd, at least as a root cause anyway. - there's way more to neurotransmitter balance than MTHFR - that's the tip of the iceberg. I found 23andMe to be among the most informative tests we've ever done.


    Next- we have mold in our attic for sure. Our roof is shot and we are in the (LONG) process of decision making about replacing the roof or putting an addition on our house. When we replace the roof, we will be tearing off all of the old (moldy) plywood, meaning really replacing the whole roof, not just the shingles.... But in the meantime, do you think this could be hindering dd from treatment?? How can I find out? Any thoughts? I would always recommend replacing a leaking/moldy roof before doing an addition. First, you need to do this to protect the investment you have in your house and protect resale value. Second, if you have mold, get rid of it before taking the risk the spores would contaminate other areas of the house. That's true regardless of whether you have a genetic mold sensitivity. Third, yes, having a mold problem and a child with an immune or autoimmune issue is most likely going to contribute to your problems. It's essentially adding an additional ton of bricks for her to carry. BUT - when you replace the roof, make sure you have people who understand mold remediation. You cannot just tear up the plywood and toss it down to the ground. You'll end up spreading mold spores everywhere. It needs to be removed by someone who knows what he's doing. You can search the forum archives on mold testing. If you have visible mold, you can buy a home test kit and take a sample - either a sample on a settle plate (petri dish), a cotton swab sample, or an actual sample of the material that has mold growing on it - and mail it in to have the lab tell you the species of mold. The kit is @$10 and to have the lab tell you the type is an additional $40. I just mailed in several samples from my house. You will read lots of negatives about this type of home test kit - but the negatives are more about the fact that it may not find hidden mold. However, it you can see mold, then there doesn't seem to be controversy over using this kind of kit vs. paying someone hundreds of dollars to do it for you.


    I feel desperate to find something to help my daughter. This is crushing me as a mother that I can't do anything, and all these meds, and therapies, appointments, blood draws (another one tomorrow am that I haven't told her about yet) are just wearing on our whole family so much. And my girl is sad, that's the worst part. :( I can't believe how long it's been, and that we're still here in the same position, and nothing is making much difference. We're going on 8 months now, and she still isn't eating. :(

    Have you told Dr M that you have a known mold problem? I'd ask him about the most economical way to look into this. He's very aware of mold as part of my DS's problems and has supported our sleuthing. Will be discussing it in greater detail with him at our next appt in a few weeks.

  10. My son went thru 2.5 yrs of lyme treatment after 2+ years of unsuccessfully trying to treat Pandas - so I understand why Pandas/Lyme parents are so eager to save others from wasted time. However, I agree with the others who say if there aren't symptoms, then don't treat. On the other hand, if the $200 is available, and there are some symptoms that don't seem to be resolving, then testing thru Igenex does give you on more data point. It's a personal decision and you should always follow your own gut, not the opinions of internet parents who only know a sliver of your situation.


    That said, I found my own lyme/Pandas ticcer son has multiple triggers for his tics. Yes, he tics when he has an active bacterial infection - be it strep or lyme. But even a year after stopping abx and going months with no symptoms whatsoever, he may still have tics crop up and we've found that mold is a strong trigger for him. Not talking about black mold creeping up the walls of damp sheet rock. I'm talking about mildew on the windows in the tweens' bathroom (the one that's subjected to too long, too hot showers). Or mildew on the drum of the washing machine that made the clothes musty and caused two of us the itch like crazy until we cleaned the drum and re-washed the clothes. Or mold on the bottom of the window air conditioner drip trays (or in FL, air ducts of a central air system.). Within days of finding and eliminating a mold source, the tics stop.


    So a mold source - in your home, in his school - might be something to rule in or out. You can test for inflammation markers that tend to rise with mold exposure and you can test a gene that indicated whether you can clear mold toxins well (HLA-DR gene). These blood tests have been covered by our insurance and can be done at any commercial lab. You can find more info here: http://www.survivingmold.com/diagnosis/lab-tests Also read "The Biotoxin Pathway" on the same site. Very helpful perspective.


    And new on the 23andMe site, though our PANS MD could probably interpret for us: We no longer offer our health-related genetic reports to new customers to comply with the U.S. Food and Drug Administration’s directive to discontinue new consumer access during our regulatory review process.



    This doesn't mean 23andMe no longer provides test results. They do. But 23andMe used to provide "health reports" that said things like "you're 1.6 times more likely to develop heart disease" etc and the FDA challenged them to provide evidence of where they were coming up with their 1/6x odds. Other sites would report on the same mutation and say "you have a 1.2x greater risk" or "you have a 1.8x greater risk" and people started getting confused. So when 23andMe couldn't provide data to make the FDA happy, they had to stop giving "health reports" but these reports were pretty useless anyway. They didn't offer ideas of what you could do about your risk, so it just created anxiety or a false sense of security if you had a low risk.


    But they still provide the raw data, which is really what you want. Best $99 we spent in this whole journey.

  12. Written by a mom with a child who struggles with schizophrenia, but we've all been there...


    To begin with and most importantly there is love. We, as caregivers, love our person with schizophrenia with our whole hearts. If we are parents to someone with schizophrenia there is also an even tighter bond because our child was created by us, born to us, and lovingly raised by us. We have ALL given pieces of ourselves, sacrificed our own way of life for them and have spent many late nights worrying and praying. Behind the closed doors of our homes or a therapist’s office or a psychiatrist’s office we put our heads together to decide what is best for our loved one and sometimes our choices work but more often we are less than successful. You see, it’s isn’t easy caring for our loved one. Besides making normal life decisions, we are also forced pretty often to decide FOR our loved ones what is best for them. Sometimes, though, we fail in our choices and find ourselves in a quiet room, our heads in our hands, defeated. The beautiful thing about we caregivers, though, is that we never give up. Never....


    Read the full blog here


  13. Saw this article and thought it was worth passing along http://www.scribd.com/doc/228432848/Dr-Mike-Gut-Dysfunction-2014


    "Antacids neutralize stomach acid, raising the pH level from very acidic (2.0) to between 3 and 4, which destroys about 99% of the stomach acid.When this happens, you completely throw off the balance of bacteria in your intestinal tract and give the bad bacteria the upper hand.To sum it up, antacids are literally killers of probiotics (good bacteria) in your gut. And it doesn't stop there.The hydrochloric acid in your stomach not only digests food--it also acts as a protective barrier for your body.Every day you ingest food and other organisms that have the potential to make you sick or even kill you.Your stomach acids typically destroys these dangerous invaders before they can cause you harm.But when your stomach acid is neutralized, the protective barrier isn't there and the invaders can get into your intestinal tract.If your gut has mainly bad bacteria to begin with, you've got a great chance of getting REALLY sick.

    * The idea that ‘too much stomach acid causes these problems is very flawed and
    simple testing can determine if you actually have too much or too little. The treatment is VERY different."
  14. Instead of just testing Cyp450, look into 23andMe testing. In addition to mold, yeast, nutritional deficiencies, you might be amazed that the role that methylation plays in neurotransmitter balance. 23andMe, for $99, tests 990,000 genetic "mutations" called snps (snips). If you have issues with certain snps, it can affect how well or how poorly you make neurotransmitters. My daughter has a defect on a gene known as MTHFR that, when not treated, made her bipolar. Treating it has helped her be emotionally stable for almost 2 yrs now. This is her story http://www.easytolovebut.com/?p=2782


    My PANS son has different genetic issues, which caused him to rage and be very rigid/controlling in his thinking. Giving him different supplements helps mellow him and lets him stay more even keeled. So knowing what makes your son "tick" can be very helpful. It also helps you determine if he's likely to benefit from SSRIs or should avoid MAO-I's and gives you the data you need to determine CYP450 mutations as well as many other detox pathways.


    Search this forum (search box is in the upper right corner) on "23andMe" or "methylation". If you decide to do the testing, you'll see instructions posted under the pinned "helpful threads" at the top of the Pandas forum page.


    In my kids, mold, strep, lyme, pyrolurria and methylation have all played a role. There's much to study but also lots of hope. Best of luck!

  15. S - You know how some people have underwear with the days of the week on them? I'm going to get you some that have diagnoses of the day (week/month/yr.) on them! ASD, PANS, 2 pairs that say LD (the baby blue ones will stand for learning disabilities and the green ones will be for lyme disease), OCD, GERD and then one that is just plain white with no words - and will represent the time when no diagnosis is needed because she (and you) are healed. :wub:


    You've been thru so much and I so admire your ability to get up after being knocked down. With 5 years backward perspective, you're absolutely right. Be in the moment. With that comes so much. You have amazing children, an awesome husband and a depth of spirit that inspires. Stay strong. xoxox

  16. I too tried a few homeopathic remedies with no changes one way or the other and also struggle to wrap my science brain around. Yet I do respect those who feel it's been helpful and I have a lot of respect for the homeopath who shares a practice with our LLMD. I've never found any harm in trying it. (except for the $).


    I was in your same boat - exhausted the strep treatments (abx, steroids, T&A, Plasmapheresis and IVIG) and finally relented and tested for lyme (which yielded 5 positive/indeterminate bands). So we did lyme treatment and again hit a wall. Then DS tested positive for KPU/pyroluria. Treatment moved him forward until he hit another wall. Deep sigh, lots of swearing, lots more eye rolling from DH, then found mold sensitivity. Got vigilant about that (without spending tons of money thankfully). DS progressed again. Got glasses for convergence insufficiency and made academic gains. Methylation supplements finally got us that elusive final recovery.


    Gosh, i sound like a nut job with munchausens - or like maybe dx'ing issues was a hobby. Happy to say we seem to be "done" with our issues collection. But what I learned from all of it is that Pandas may actually be the final straw after a long period of teetering with other health issues. Or...it may be only the tip of the ice berg, making the body vulnerable to other insults. Chicken/egg question I suppose. But either way, having an autoimmune response to an infection and not being able to recovery entirely might mean there are other issues contributing. So it makes sense to test for other things.


    So if he's negative for lyme, then what? Oh, don't worry - there's a long list of other things to look for!

  17. You can do a search of old posts and find a few discussions. We tried it once for each kid. Didn't see changes one way or the other, but everyone is different. You can also look into butyrate, which is supposed to help thicken the mucus lining of the intestines. We tried it last summer for leaky gut. Didn't see changes but again, it helps some people. The literature made it sound promising (tho it should be avoided by people with CBS mutations).

  18. I started this post when my DD was dx'd with EBV. We did 2 cycles of artemisinin (6 weeks of 5 days/wk then a week break in between, then another 6 weeks, I think). Didn't help much. We then tried l-lysine 500mg 2x/day - viola. Within a week, she was off the couch. Within 3 weeks, she was ready to go back to school 6 hrs/day. After 6 weeks, she returned to school full time.


    I love l-lysine. It's my "go to" for canker sores and any onset of cold symptoms. It doesn't always work. Sometimes the cold comes on full bore anyway. But sometimes, it stops the cold in its tracks. I have a 50/50 track record against colds. it was awesome against EBV.

  19. Your reasoning makes sense, tho FWIW, 32 would still be a low D level for many of the intergrative docs. They generally shoot for above 50. But with warm weather months ahead, you can probably just try re-adding it in the fall. The only thing I'd keep in mind that it may not be lyme, or even co-infections. Mold, methylation, viruses, etc....can also be triggers. So if you strike out in one place, never fear. The peanut gallery will have lots of other trails to suggest!

    • Sacc B makes my son rage and display "yeast-like" behaviors - tics, sillyness, impulsiveness, brain fog. It isn't a "good" yeast for everybody.
    • NAC makes my daughter go nutso - rage, depression, mood swings. It makes me depressed and raised my ALT and AST liver enzymes - we both have CBS mutations and can't tolerate the sulfur level of NAC
    • Antihistamines (specifically zrytec) gives my daughter anti-cholinergic symptoms like shaking, tremors, and tachycardia.

    So I'd consider methodically removing one of these, or the Vit D as smarty suggests, and see what happens over 2 weeks. If nothing changes, you can probably add it back. Then remove something else.


    As for a never-ending flare, I insisted my son only had strep issues and for 2 yrs, chased strep, blamed "exposure" to friends who had strep, etc. Strep was a big problem for us but so were lyme and mold - I just refused to look for it in those places. When I finally did, we made progress. So if it isn't the supplements, it's possible there's another root cause beyond strep that you haven't found yet.


    I get how the tics are unsettling, They kill me too because they mean something's wrong. But...I'll take them any day over having my son confess that he's having intrusive thoughts about harming me or raging so badly that he loses friends. Those times were way worse.

  20. Plenty of kids have battled Pandas/Pans and moved on to be just fine. We spent 5 years taking steps forward and backward but my son is back to enjoying a very "normal" childhood. He's been off antibiotics for over a year. He was sick for a year before a doctor would support us with long-term antibiotics, We then treated Pandas with plasmapheresis and then IVIG. We went on to find undiagnosed lyme that was likely the infection that started the whole thing. Then we found pyroluria - a genetic zinc/B6 deficiency that was holding him back. Then a mold sensitivity that was getting in the way. So it was a lot like being stuck in a video game, with new, harder challenges at every level. But we did finally finish the game.


    It was a really hard period in our lives. I think it was hardest on my daughter, who's been left feeling "less loved" because she got less attention and therefore short-changed for being health(ier). It keeps me mindful that I need to give her my full attention when she needs it now. But overall, my son came through it all as a better person than he probably would have without the experiences. My DH and I are better parents, less pressured to meet false expectations or get caught up in unimportant drama. I think we've learned to savor small moments and we all really appreciate what we have, taking less for granted. We take pride in not being normal, in realizing no one is normal and everyone has issues. it's just that some people waste time trying to hide their problems.


    I live on a cul-de-sac with 18 houses. On our street, we have three kids with OCD, two with autoimmune diseases (one of whom needs to be home schooled because an infection could destroy his kidneys). One family imploded when the wife had an affair with an old flame. One family did the same when the dad left to be with someone he'd known for 3 months. One teen is "orphaned" by parents who are never around. One mom is now a breast cancer survivor. And these are only the neighbors I talk with. The other half probably have similar struggles that I just don't know about. I consider my family among the lucky ones. We pulled together, we're affectionate, we're grounded by knowing what matters in life. I think Pandas helped us focus - it could've been so easy to get swept up in superficial things had we not been forced to face constant reminders of what really matters. Had the battle ended too soon, I'm not sure the lessons and gifts would've taken root.


    I'm absolutely thankful we got through it all and no longer live the nightmare. But I don't regret our experiences. I came across this blog today - maybe it will help

    Sometimes life closes doors because it’s time to move forward. And that’s a good thing because we often won’t move unless circumstances force us to. When times are tough, remind yourself that no pain comes without a purpose. Move on from what hurt you, but never forget what it taught you. Just because you’re struggling doesn’t mean you’re failing....(read the whole thing here)


  21. In Pandas kids, the ADHD issues sometimes have to do with elevated CaM Kinase II enzymes in the basal ganglia. CaM KII plays a big role in memory formation and attention/recall. It's not the same issue that kids with traditional ADHD have with the frontal cortex and need for stimulation.


    The Pandas Primer may be helpful regarding your other questions on lab tests http://latitudes.org/store/should-you-consider-pandas-ebook/

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