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Posts posted by LNN

  1. You're right, Shoemaker does have blinder on and I'd love for him to be more balanced. But your other labs do seem to support mold as a possible issue. My DD had high C4a (8000)- which from my readings, only seems to go high from lupus, lyme or mold. From there, like Mama's dr, our LLMD did some of the other Shoemaker tests. DD's MSH was undetectable. Her issue seemed to be mold and MARCONS.


    No, the MARCONS swab isn't painful. Paying for the various treatments - that was painful.


    We did CSM for several months but I can't say I noticed any huge benefit. It wasn't expensive at all but DD couldn't drink the stuff. It was nasty. So I put it into empty gel caps and she took those. Not sure if the gel cap somehow made it less effective, but it was the only way she was going to swallow any. I think of CSM as a stop gap measure. For DD, the only thing that got her feeling well again was to remove her from exposure (school building) and then fight a long battle with MARCONS. It's really hard to get rid of and can bring so many of the same symptoms as Lyme - muscle pain, fatigue, headache, nausea, dizziness, brain fog... Shoemaker's paper on C3a and C4a is here http://www.jacemedical.com/articles/C4a%20C3a%20testing%20for%20Lyme%20disease.pdf


    I haven't read it in awhile but I seem to recall he ends up saying elevated C3a is lyme and C4a is more mold. I can tell you my son didn't get better from lyme until we got him out of the same moldy school building that caused my DD so much trouble. So it's not like you can't have both lyme and mold issues. But go with your gut.



  2. My dd had this for 15 months. It definitely spread to many areas of her body and although one section of bumps would resolve, another area would crop up. Do not reuse or share towels or you can spread the infection. My son ended up getting a few but it stayed more limited. We tried many home remedies. The one that worked for us was to soak a cotton ball in apple cider vinegar and place it onto the bump, then cover it with a bandaid to hold it in place for a few hours. Over 3-4 days of doing this, the bump would turn angry red, come to a head and then scab. It would then disappear over a few more days (no need to apply the ACV once it scabbed). During the angry period, we sometimes had to limit the duration of ACV soaks, as it can be irritating. And the kids hated smelling like easter eggs (the ACV has that distinct smell that reminded them of dying eggs). But it worked and if they could suck it up for 3-4 days, we'd get rid of the bumps. I only wish we'd done it when the infected areas were small. Having to treat many many bumps too a long time to tackle.


    Try the ACV on a few bumps. If they turn red, it's probably molluscum. If you see no change, it's probably something else.

  3. Our nebulized formula was to treat MARCONS from confirmed mold exposure (using the diagnostic tests listed on www.survivingmold.com). It was a compounded powder of dexamethasone, clindamycin and itraconozole. The clindamycin was chosen from the list of effective abx from the lab that did the MARCONS culture and we used that one due to her allergies to other abx. You could certainly opt for a different one based on your own results (tho I seriously caution against fluoroquinolones and would use gentamycin only if abx with lesser risks weren't an option). Just prior to a nebulized dose, we'd dissolve the mix into 5 ml of saline. And we used the pediatric mask that came with the nebulizer as a way to deliver the mist into the sinuses. She was able to watch TV or be on her computer during the treatment but had to type with one hand or turn the TV up to hear it over the sound of the nebulizer. It took approx 15 min per session.


    Our nasal spray was also compounded and had fluconozole, clindamycin and edta for films. This was formulated using another MARCONS swab for bacteria and fungus.


    We use a neti solution that has xylitol in it and also have a xylitol spray. Not sure I've seen any great results but it probably doesn't hurt. But you might want to google how xylitol is made. Although it's a naturally occurring compound, the chemical processing they use to turn it into a mass produced item may linger in the finished product. Not saying not to use it, but reading about the processing was eye opening for me.

  4. At the top of this forum, you'll see a pinned thread of helpful lyme posts. I'd encourage you to read through them. You're quickest answer would come from doing a $200 basic Igenex panel. The Cunningham panel was helpful for us (both my kids did it in the early days of the research trial, before it was a commercial test). But the markers can be elevated from more than just strep antibodies. Lyme kids can also show high markers.


    Certain strains of strep carry an M protein on the outside of the cell wall that the body's immune system reacts to. Very similar M proteins exist on the outer walls of certain cells in the heart and the brain. In Pandas, the immune system attacks these "self" cells in a case of mistaken identity - molecular mimicry. Lyme spriochettes also have a similar M protein and some of Cunningham's research in the 90s talks about this, tho it wasn't the focus of her papers. So high Cunningham makers can tell you if you're dealing with an autoimmune response but it isn't a response solely caused by strep. And that's what the new research paper from Columbia Univ confirms that other invaders can trigger that same response. Do the panel if you think it will help get your DH on board. Just know that it will confirm an autoimmune issue but it won't confirm the trigger.


    And while I'm not a doctor either, my understanding was that viruses spread through mucus and human fluids. So you'd be contagious for as long as you're sneezing or coughing or ejecting virus germs from your body. Your DH may be thinking of certain bacterial infections where you're infectious prior to symptoms. But even then, for a Pans family, I don't think you can count on a normal immune response and need to take precautions until you're sure the infection is gone. You can check with your Pans doctor, but that's my understanding.

  5. I don't have the MARCONS lab report in front of me and don't remember if it lists the exact type of staph - I want to say it doesn't. But it does give you a list of antibiotics and lists whether the staph is Resistant, Sensitive or I (which I can't recall the wording but means somewhat sensitive but not completely). I don't know if a regular lab culture would reveal the same infection - I know it's always taken a minimum of 2 weeks to get results. The fungal report takes even longer. If your sinus guts are open minded, they may be willing to do a slow growing culture. I'd certainly also ask for fungal culture.


    You mention a nebulized formula that uses cipro - cipro causes horrible side effects for my daughter and she too is allergic to a number of abx (penicillins and cephalosporins in her case). In Nov. the FDA voted to change it's position on cipro and related abx and now urges extreme caution and suggests using alternative abx for most situations. Gentamycin also has a serious risk profile and can cause hearing loss. So just be very careful. Although literature suggests that abx delivered in a nebulizer aren't systemic, that they stay localized in the sinuses, that doesn't seem to be my daughter's experience. Have a detailed conversation with the prescribing doctor and make sure you know the risks of any medication before you start using it. Cipro and gentamycin side effects can be permanent.


    We've used two different approaches. We've used a compounded powder that we mixed with saline and then neublized it, and we've used a liquid spray. The nebulizer seems to penetrate the upper sinuses much better but it can take 20 min, twice a day and after months, can become hard for a kid - makes them start to think of themselves as "always sick". The spray only takes a few seconds and is easier on the psyche, but seems better for less invasive or less chronic infections.


    As for how we found the mold, my daughter would go to school on a Monday feeling great and by Wednesday would be sick as a dog, unable to go to school. During school breaks, her health would return. The school was initially cooperative but then became difficult. My daughter recovered her health over the summer but then missed 9 of the first 13 days of school in Sept. so we decided to home school this year. We've also done a great deal in our home to make sure there's no problem here ( replacing carpet with hardwood, getting rid of house plants, no mold-friendly material in the basement like cardboard boxes or fabrics, de-humidifiers and testing). Your best bet would be to put absences or flares onto a calendar to look for a pattern.


    In your other post, it sounds like lyme might also be a possibility. It's hard to tease out mold vs. lyme vs. marcons vs Pandas. Between my two kids, we've dealt with all of it but it was a process of whittling it away. See if Amy will order C4a and C3a blood tests. Shoemaker feels that C4a is indicative of mold and C3a is indicative of lyme. Also talk to her about doing an Igenex lyme test. Sometimes, it's more than one hurdle in your way.

  6. Here's the link to the paper https://www.jci.org/articles/view/80792/version/1/pdf/render

    and a summary


    Researchers have discovered how immune cells triggered by recurrent Strep A infections enter the brain, cause inflammation, and may lead to autoimmune neuropsychiatric disorders in children, including PANDAS. Children with PANDAS exhibit high levels of anxiety, motor and vocal tics, obsessive-compulsive behaviors and a host of other symptoms that often appear “out of the blue” or increase dramatically, seemingly overnight.Their study found that immune cells reach the brain by traveling along neurons that originate from the nasal cavity.


    This study explains, for the first time, exactly how upper respiratory infections can trigger both physical and neuropsychiatric symptoms.


    According to the study’s co-leader, Dritan Agalliu, PhD, at Columbia University Medical Center, the Strep A bacterial cell wall contains molecules similar to those found in human heart, kidney, or brain tissue. These “mimicking” molecules are recognized by the immune system, which responds by producing protective antibodies. But because of this molecular mimicry, the antibodies react not only to the bacteria but also to the body’s own tissues. The molecular mimicry process has been well researched by others. But previously, scientists didn’t understand how these autoantibodies would gain access to the brain, because brain vessels form an extremely tight blood-brain barrier. This study answers that question.


    Researches have known that recurrent Strep A infections trigger the production of immune cells known as Th17 cells, a type of helper T cell, in the nasal cavity. But it was unclear how these Th17 cells lead to brain inflammation and symptoms such as those seen in children with PANDAS. Through this study, Drs. Agalliu and colleagues found that bacterial-specific Th17 cells move along the surface of olfactory, or odor-sensing, axons that extend from the nasal cavity through the cribriform plate, a sieve-like bone that separates the nasal cavity from the brain. From there, the cells reach the olfactory bulb in the brain, which processes information about odors. The Th17 cells break down the blood-brain barrier and enter the brain,, allowing autoantibodies and additional Th17 cells to enter the brain, causing neuroinflammation.

    In addition to illustrating how PANDAS occurs, the study also validated some of the experiences many parents have had regarding their PANDAS children:

    • Strep A is not the only trigger – Parents have often reported that infections other than Strep A seem to trigger PANDAS symptoms. This feedback was so abundant that researchers proposed making PANDAS a sub-set of a new, larger category called PANS – Pediatric Acute Onset Neuropsychiatric Syndrome. Unlike PANDAS, PANS does not associate the onset of symptoms specifically to a Strep A infection. Dr. Agalliu’s study shows that Th17 cells persist in the brain for at least 56 days after initial infection, even when nasal tissues no longer show signs of an active infection. “Several other bacterial and viral pathogens, including influenza virus, mycoplasma and Staphylococcus aureus (nasal staph infections) induce robust Th17 responses and could also play a role in an exacerbation of behavioral symptoms in children with PANDAS if autoantibody levels are primed by previous (Strep A) infections.” (pg 11 of article).
  7. A few thoughts - first, viruses can cause Pans flares - doesn't have to be strep. Second, you may want to check your husband to make sure he's not a strep carrier. What his body reacts to as a "cold" could be somewhat asymptomatic strep. Third, when kids flare on a monthly basis, it can sometimes be Lyme. Lyme spirochettes have a 3-4 week life cycle and a significant number of Pandas kids have later been diagnosed with lyme (in addition to a strep infection). I swore for two years my son was "classic Pandas" but actually had Lyme and once we treated that, he was finally able to get and stay healthy.


    My experience with IVIG isn't that it's to prevent strep infections. Rather, it floods the immune system with "well-behaved" or "properly educated" antibodies pooled from thousands of donors and that flood overwhelms/overrides the body's own antibodies which are prone to attack the self. It's kind of a "peer pressure" that stops your own antibodies from launching the autoimmune response. However, it does not prevent future infections and does not prevent auto-antibodies from being produced by your own body in future infections. It doesn't seem to be a "one and done" treatment. IVIG made my son way worse for 10 weeks because it ramped up his immune system against the undiagnosed lyme and produced a killer herxheimer reaction.


    If you're leaning toward IVIG, please have your doctor screen him for current infections such as lyme, mycoplasma and common viruses. Standard lyme tests are highly unreliable because they omit two markers that are definitive for lyme (these markers were eliminated when a lyme vaccine was introduced and the labs didn't want people getting false positives due to having been vaccinated. However, the vaccine failed and was pulled after 2 yrs, but the labs have never resumed testing for these markers. You'd need to use a lab that still tests for these two markers)


    As for homeschooling - I reluctantly decided to homeschool my daughter this year due to mold in her school building. It's been a 90% positive experience for both of us and a Godsend in terms of helping her deal with medical issues without the pressure of school attendance, 504s and administration not understanding our reality. I was intimidated by the idea but it was a very good decision for us.

  8. My daughter (10) struggled/struggles with MARCONS. I don't think you'll find much literature aside from Shoemaker because I think this is his name for the condition. But if you search for "chronic sinusitis" or "resistant staph sinus infection" you'll find more research. You'll also find a lot searching for chronic fungal infections. It's real and it's recognized as the nemesis of people who suffer from chronic sinus issues but it isn't called MARCONS in the literature. Yet MRSA is unquestioned as a resistant staph infection of the skin, so it seems reasonable that a chronic infection of sinus tissue could also cause a subset of people some serious problems.


    I get where Buhner is coming from and I respect his knowledge as an herbalist. There can be a lot of "the sky is falling" panic among people who have chronic diseases like lyme. But I lived through Pandas and Lyme with my son and in my experience, when people stay sick, you need to keep digging beyond the obvious infections because something else is keeping you from getting well. For both my son and daughter, mold was one of those roadblocks and I think Shoemaker correctly sheds light on mold and MARCONS as things that, when treated, can help people get on the road to recovery. You can fault Shoemaker for being a bit too zealous, for being too quick to blame mold for everything. Buhner's probably right in that for some people, staph is no big deal. But for a group of people, Shoemaker's dead on and has solid research to substantiate his views. The question becomes - is your child part of Buhner's group or Shoemaker's group?


    My daughter is part of Shoemaker's group. She struggled with serious health problems due to mold in her school and developed MARCONs and a chronic fungal sinus infection. So the bad stuff in school eventually lived inside her, making her sick no matter where she was physically located. She didn't recover her health until we finally eradicated both the fungal and staph infections. BEG spray didn't work for her. She needed a nebulized concoction of itraconozole and clindamycin for several months. But it did slowly work.


    I have to disagree with Buhner on one other often quoted statement he's made regarding the use of certain herbs. He recommends a blend of cryptolepis, sida acuta and alchornea. He says that he knows of no ill effects even tho cryptolepis and sida have the same mechanism of action as fluoroquinolones like cipro. Cipro caused serious side effects in my daughter and I think he's sometimes too dismissive of the potential side effects of cyrptolepis and sida. I have both of his books on antibiotic and antiviral herbs and while he does a great job explaining how they work and their benefits, the books are light on things to look out for, potential side effects, warnings about overuse. etc. I'd feel better if his message were a little more balanced. So I think you need to take statements from both men and evaluate them in terms of what seems to ring true for your family and your experiences.


    One final thought - the research paper that came out a few weeks ago showed that Pandas occurs when antibodies against an infection travel up the sinus passages into the olfactory bulb and breaches the BBB via the cribiform plate at the top of the olfactory bulb. The paper then goes on to say that chronic sinus infections then seem to prime the immune system to (over)react to other infections beyond strep and specifically names staph and mycoplasma as triggers. So if your child has Pandas already and now has a resistant staph infection in his sinuses, then it seems like the stage would be set for a Pans flare if the MARCONS goes untreated. This was true for my daughter, who for years has been borderline Pandas but always quickly recovered if we got her on antibiotics quickly. Now, after the mold and MARCONS issues, she seems to be full blown Pans and after a second MARCONS infection in October, is taking a very long time to recover.


    Only you know what's best for your child, especially since he's a teen. Neti pots can be tough and treatments can be hard for a teen who just wants to be like everyone else and who wants to assert his independence. But he might be playing roulette in this case. I don't know that irrigation is your only option. As I said, a nebulizer helped my daughter and she's recently had success with a spray that's similar to BEG but uses clindamycin not gentamicin and also includes an anti-fungal. BEG spray stings. Her concoction doesn't. So I don't know that you need to follow Shoemaker's protocol to the T (tho he'd disagree of course). You have options. But some sort of treatment that your son can get on board with might be worth pursuing.

  9. Nearly every doctor in the country who specializes in Pans, lyme, mold or other chronic illness does not take insurance. It doesn't mean they are trying to prey upon patients. It means they don't feel they can effectively treat a complex medical case in the 15-20 min visit that insurance will reimburse for. Most spend 30-45 mins per patient. They then provide a claim form that the patient can submit to insurance. In general, once a patient has met the deductible, the claim will be covered at 60% as an out of network provider. As I said, this is a near universal situation for these chronic illnesses. There are better and worse physicians, to be sure. But the not taking insurance isn't in and of itself a flag in this type of situation.


    If you think a virus was the trigger, the next question is - is there current inflammation of his sinuses? There was a research paper published this week that explains the autoimmune actions that take place in Pandas - the antibodies against a respiratory infection migrate up the nasal tissues into the olfactory bulb and then weaken and cross the blood brain barrier. From there, autoantibodies trigger neuroinflammation of the amygdala - the center of the fight or flight response. The study found that these autoantibodies persist long after the initial infection - 56 days at least. They also found that subsequent infections - even viruses, staph and mycoplasma - can trigger the same autoimmune response. So they keys become - clearing infections and keeping the immune system calm for a substantial length of time.


    Can you keep him in a bubble? Of course not. But you can ask for a nasal culture and even if it's "just staph" and you're told that everyone has staph in their noses, in a Pans child, this isn't as harmless as it is to others and would need to be treated. Most Pandas kids start to show improvements once the infection is cleared. If it's not calming down, it often means the source of the infection is still lurking. Sometimes the antibiotic you've used isn't the right match for the infection you have. Zith is commonly used for Pandas but isn't great for nasal infections. If it's viral, you'd need an anti-viral and not an antibiotic. Prednisone is very helpful for inflammation but if the infection is active, it won't be successful because the source of that inflammation is still there.


    Many doctors dismiss Pans out of hand, despite a growing body of evidence to the contrary. Your posts have many flags that say "Pandas" - sudden onset, flu mist, symptoms that match the disease, and (I assume because you're posting) a lack of improvement from the medications he just started. But it isn't for me to say what's causing all this. Only you can decide what strikes a chord.


    One final thought - my daughter used to have a chronic cough that got much worse at bedtime. We put allergy covers on her mattress and pillows and the cough went away immediately. If you have carpeting, stuffed animals, etc you may want to consider removing those.

  10. While I respect the risks, there are risks of NOT using abx too. You can get stephen buhner's book "Natural Antibiotics". He likes three herbs - cryptolepis, sida acuta and alchornea. I don't feel comfortable recommending the first two because they have the same method of action as ciprofloxacin and my dd had serious side effects from ciprofloxacin. But she's had good response to alchornea. You can get it from www.woodlandessence.com. it tastes horrible but I put a dropper full into any empty gelcap (from Amazon) and she takes it quickly before the liquid dissolves the capsule, so there's no taste. If Dr k won't budge and you can't find an integrative Dr to help, consider herbs. Having a nervous breakdown in the cvs minute clinic has also worked once or twice for me.

  11. I have two kids - one had Pandas, lyme disease and a mold sensitivity. The other has a severe mold sensitivity that produces neurological issues. So your post made me think of several possible causes.


    First, as Sheila mentions, I'd look into Pandas/Pans. Even tho your son's strep titers were normal, that doesn't mean much. There are two strep titer tests - one is called ASO and it peaks between 1-3 weeks after an infection. The other is called anti-DNase B and is ordered much less often. It peaks around 6 weeks after an infection. So if you take a titer test at the wrong point in time, it may come back in the normal range, not because there wasn't strep but because you didn't test during that titer's peak time range. So high titers can give you info but normal titers don't mean there isn't or wasn't an infection. So it's worth exploring further.


    Second, when my son developed Pandas, I spent two years insisting that was all that he was dealing with. His symptoms started right after a strep infection. Come to find out that chronic lyme can produce virtually the same symptoms as Pandas because the proteins on the outer layer of a lyme spirochette are similar to the proteins on the outside of a strep bacterial cell and there are tissues in the body (in the brain and heart) that also look similar to a confused immune system. This similarity is what causes the "molecular mimicry" that might be behind Pandas and rheumatic fever. Well, my son had been bitten by a small tic a few months prior to his strep infection. So lyme was there all along and I'd been searching for just strep. Mycoplasma (the bacteria that often causes pneumonia) is also a big trigger. There was also a research paper published this week that explains how the sinuses are actually a huge trigger for Pandas neurological symptoms. After finding that mulitple infections can trigger the neuropsych symptoms in Pandas, the NIMH made Pandas a subset of a larger autoimmune disease called PANS. So if your gut tells you there's a trigger, infections are certainly worth investigating. It's especially telling that you talk about such a sudden change in your child. In that case, treatment would not be the same as it is for a tic disorder. It would include antibiotics for an extended period of time.


    If you want to learn more about lyme, read Pam Weintraub's "Cure Unknown" which talks about why Lyme is so under-diagnosed and why standard lyme tests are so unreliable. You can also read through the site http://www.ilads.org and other lyme non-profit sites.


    Just when I thought we'd gotten rid of infections, when my son was doing so much better, he'd get an eye tic in the spring and fall. After a long search, I found out that mold was causing the remaining tic. I found mold inside the drum of my washing machine, on my son's window that was next to his fish tank (lots of moisture and water with bacteria make a great set up for mold). He once had an eye tic that we tried to get rid of for months - and it went away two days after we found the mold near the fish tank (we got rid of the fish tank soon after). It was also in his school and he got much, much better when he moved out of that environment. I'm now homeschooling my daughter because the same school made her extremely ill.


    The weight gain you describe - could it be from medications? If not, mold is also known to cause rapid weight gain. Crazy, right? If you want to look into it more, a good website is http://www.survivingmold.com The book "Surviving Mold" by Dr Ritchie Shoemaker is also helpful.


    I don't mean to overwhelm you with so many ideas. But for my kids, it was more than just one thing that lead them back to help. Like you, I lost my kids almost overnight and spent a very, very long time getting them well again. Many doctors weren't able to help because they were stuck in one way of thinking. But with the help of Latitudes communities, I was able to peel away the layers with the help of an awesome osteopath. You just can't ever give up or stop fighting for the son you know is still inside. You will get him back.


    I'm not on the forums very much these days - working and homeschooling. But if you'd like more links or have questions, please feel free to send me a private message (there's an image of an envelope in the upper right corner of this forum) and it will go to my personal email.


    Stay strong. Tics and anxiety are hard to live with but when you find and remove the trigger(s), the body heals.

  12. the thing with Vitamin D is that it's supposed to help your immune system and some docs say it's actually a hormone, not a vitamin and that it helps regulate sleep. S being deficient isn't a good thing. But as you suggest, until you can get your dopamine levels lowered, supplementing D may not be the right thing at this time. Or, as others say, maybe taking mega doses is less than ideal and smaller doses may be a better approach.


    As for copper, 2mg daily is what's in many mutli-vitamins. So I'd think you'd be ok trying 2mg daily without testing, since testing isn't available to you. The other way to "test" is to buy liquid zinc (here's one example http://www.amazon.com/Designs-Health-Challenge-Liquid-Fluid/dp/B000FGXMAY/ref=sr_1_6?ie=UTF8&qid=1449171993&sr=8-6&keywords=liquid+zinc)

    If you drink 10ml and it has a metallic, strong taste, you have plenty of zinc. If it has no taste, you're supposedly zinc deficient. Zinc and copper are opposites. So if you felt this drink had a strong metallic taste, you could assume you had plenty of zinc in your system and that supplementing with copper would be fine. (You may not want to supplement with copper if this liquid had no taste at all, as the copper supplement could make a zinc deficiency worse).


    My understanding is that copper speeds up the MAO-A enzymes, which help you drain epinephrine (aka adrenaline) and dopamine. For COMT, niacinamide can help speed that up, also helping you drain dopamine a little faster. But I think you tried niacinamide before?


    If you can get these enzymes working better, maybe supplementing with low dose Vitamin D would then be more beneficial than it seems to be right now. In the US, you can get drops in as little as 400 IUs per drop. Check Amazon for this as well.

  13. These links can help on the relevance of some of these results https://labtestsonline.org/understanding/analytes/cbc/tab/test

    and https://labtestsonline.org/understanding/analytes/cmp/tab/test


    It doesn't look like you're deficient in folate or B12 - but the important thing to remember in methylation is that you may have enough of the raw materials but if your snps prevent you from efficiently converting those raw ingredients into the forms the body needs, then you can still be deficient in the finished product. So you may have lots of folate, but someone with MTHFR +/- can only convert 50% effectively and +/+ may only convert 10% into the needed methylfolate form. That's why supplementing with the "already-converted" methylfolate can bring results when supplementing with regular folate can make things worse (because it causes a build-up of unusable folate, called a folate trap). The thing that would be effected downstream would be homocysteine, which I think I recall you might not be able to get tested? So you're still stuck treating based on how it makes you feel :(


    Your lymphocyte and white blood cell counts are low, which rather than meaning you're infection-free, could mean you're immuno-deficient and can't raise a sufficient immune response to fight off an infection. If you could ever manage another blood draw and your doctor could order it, you might find it helpful to run an Immunoglobulin panel that measures your IGg, IgA, IgM and IgE levels. Some Pandas kids are low on these tests and it helps them qualify for IVIG.


    I'm sorry you didn't get more answers from this time around - though I'm glad you found the anemia and low D. Correcting those levels are bound to help you feel better in some ways. But a huge congratulations for getting the blood draw!! That should be cause for a huge celebration!!!

  14. Nancy, could be that there's something inflaming the vagus nerve, which runs across the stomach. That inflammation could be anywhere along the vagus nerve. My DD had a sinus infection that caused nerve issues in her legs. Pedi looked in ears and throat but never the nose, dismissed the complaint of sinus issues and referred us the neurologist. LLMD looked in her nose, Rx'd abx and two doses later, leg issues resolved. He speculates that there are inflamed nerves or pressure against the frontal lobe that are somehow interfering with nerve signals in a different part of the body.


    As you already know, naming a set of symptoms just for the sake of having a medical name for "I don't know" is useless. Hopefully your friend can find an inquisitive doctor who's willing to explore inflammation/infection and not blame the child if/when anti-depressants aren't the answer.

  15. In the US, checking Vitamin D and homocysteine levels are very common. My dr. orders them every year as part of my routine physical - and he's very mainstream. Done by any commercial lab in the US. Ammonia levels can also be checked by any lab but for this, some doctors would want to see outward symptoms before pursuing.


    The only thing to be mindful of is that in the US, Vitamin D levels that are above 30 are labeled as in normal range but most integrative doctors say the levles should be between 50-100 and that 30 is still too low to lead to good health.

  16. If you're questioning the B12, then maybe skip that for a few doses and stay on the every other day trial of niacin (or niacinamide - which won't cause a flush). Ideally, you'd base B12 dosing on your homocysteine levels, but since blood draws aren't possible for you, you just have to go by how you feel. But only drop the B12 and stay on the niacin - otherwise, you'll be changing 2 variables at once.


    I think it's premature to get discouraged about the niacin. Just because you felt better after the first day and didn't feel anything on the second dose, I wouldn't put too much emphasis on that. Stay on your every other day plan for a time - for two reasons. First, you don't want to change a second variable if you're thinking of dropping the B12. Second, it's not (so far) making you feel bad. And 2 doses isn't long enough to draw any conclusions.


    I know you get frustrated when I mention anxiety, but isn't OCD an anxiety disorder? Aren't compulsions a way of alleviating the stress/anxiety? COMT +/+ would suggest that you're not breaking down anxiety-related neurotransmitters like ephinephrine (adrenaline). Your signature talks about not being able to do certain things, being somewhat ruled by what I'd call anxiety-driven aversions or fears? Maybe you're defining anxiety differently than I am? Not trying to be combative at all. I'm just confused and it's hard to suggest options if I'm not understanding how these things are getting better or worse with the changes you're trying.


    Anyway, just my two cents. Stay on the D and the niacin(amide), see how you feel without the B12. But I'd also give some really serious thought to trying to get a blood draw to check your D levels, your homocysteine, maybe your ammonia levels and other things. I believe in using the body as your guide, but sometimes, numeric data can cut to the chase and give you invaluable guidance instead of throwing spaghetti at the wall to see what sticks. This has to be so frustrating for you.

  17. I personally think the body should always be the guide on supplements. If you don't like how you feel, then stop. Given your mutations, I wouldn't be surprised if at some point, you find a little methylfolate helpful, but it sounds like now is not the time and as you say, maybe you're getting enough from your diet.


    It sounds like moving on to COMT makes a lot of sense. Do stay on the B12 you've started. Your signature doesn't give your VDR so you'll have to rely on Heartfixer. I understand you have issues over blood draws but ideally, you'd have your Vitamin D levels checked before starting anything. Since I'm guessing that's not available to you, start at a "lower" dose of 1000 IUs, or given your sensitivity, maybe even 400 IUs. Give that a week just to make sure you don't have any negative reaction (you may feel nothing - IDK). Then add a little niacinamide 50-100mg. Try every other day to start, then move to daily if you find you feel better on it.


    Personally, I'd only focus on COMT with adding D and niacinamide before looking at MAO. I don't know that any of this will help with the OCD but it should help with the anxiety. Good luck!

  18. The school is legally required to provide your son with a "Free and Appropriate Education" (known as FRAPE). If he isn't in attendance and you don't have a medical 504 plan (which requires a letter from your doctor providing a reason for absences as well as a description of what accommodations your son needs), then the school will keep pushing you to get your child into school. Technically, they could get confrontational and do a home visit to check on your son's well-being. In some cases, this could involve a DCF case worker (who is often accompanied by a police officer to prevent confrontation but also serves to intimidate parents). Without proper medical documentation, you can be accused of truancy.


    Not trying to scare you - but both DCMom and I are old timers and have had our share of 504 meetings - some helpful, some awful. In general, when you are getting your child into the building, schools tend to be cooperative. But when you can't deliver your child to them, then they get nasty very quickly. A medical 504 letter can say your child is unable to attend school - in which case the school is legally required to provide tutoring to the child's home. This costs money, and schools tend to fight this tooth and nail. Often, they'll reject your doctor's letter and require your child to see "their" doctor for a "second opinion". If this second doctor says there's no reason your child can't attend school, then you become responsible for a truancy issue. And even if you are able to get home tutoring, it's only one hour per day - not exactly what's in your child's best interest.


    We found ourselves in a contentious situation with my daughter, who would go to school feeling great on a Monday and be home sick by mid-week - for months. Our integrative doctor finally did blood work that showed mold exposure. Since she was getting sick in school, the school became far less cooperative as time went on. We limped thru 6 months of last year. But when my daughter started school healthy on Sept 1 and had missed 7 of the first 13 days of school this year, we withdrew her and are now homeschooling.


    If you have the funds, consult an advocate. It will probably save you a lot of grief in the long run. Definitely PM DCMom if you haven't already. Arm yourself with knowledge. The school will keep pushing.

  19. I'm sorry. I understand. My DD (non Pandas) has been constantly sick from mold exposure at school and we just decided to homeschool to get her healthy. There's a FB group for Pandas parents who homeschool - called Homeschooling Pandas.


    Maybe your LLMD is right that T&A could cause problems, but so can leaving a chronic source of infection in place. It's like knowing there's a thorn in the lion's paw and leaving it there because taking it out might cause problems. Well, so does leaving it there. If her tonsils are chronically infected, the immune system is becoming exhausted from having to battle both strep and (potentially) lyme. It eventually loses the war. I'd get them out. A T&A helped my Pandas/Lyme son with no negatives.

  20. Niacin is the "antidote" to too much methylfolate. However, niacin can cause a "flush" - a rapid dilation of the small capillaries that causes your skin to turn red, you feel hot and itching (due to a release of histamine). It's harmless and passes in about 20 min, but very uncomfortable. So I use niacinamide instead - it doesn't cause a flush. But you don't want to take too much - maybe 50-100mg in cases where you feel really "wrong" shortly after taking what you think is too high a dose of methylfolate. If it's been hours or more since your last dose of methylfolate, the niacinamide will be less helpful.


    I'd stop the methylfolate and hydroxyB12 for 3-5 days and see how you feel. Then maybe go back to 67mcg daily for 2-3 weeks. If you can, split the hydroxyB12 and only take half - tho even at 1000mcg, you're probably only absorbing about 10% if taken sublingually. Less if taken orally into the stomach.


    Don't get discouraged. My DD only needs 67mcg every other day. Sounds crazy that such a small dose would have any effect at all. But for her, it's the difference between level headed emotions and feeling bipolar. No methylfolate at all and she's bipolar. More than 67mcg every other day and she's bipolar. This is her sweet spot. I don't pretend to understand it. But I know enough to respect that that's what her body says it needs. I've regretted it when I've deviated from this dose.


    Be prepared for a few months of ups and downs as you find your own sweet spot. You don't get to find out where that spot is without going over and under as you zero in. It's like playing a game of Battleship. Trial and error until you get the results you need. The good news is that you did react. The other good news is that you didn't start out with an even higher dose tablet. You have the liquid and can get pretty finite with your dosing. So that's a positive. Try one drop daily. Or one drop every other day. Or every third day. You'll need to experiment. Take a 50-100mg niacinamide (or split a capsule if this proves too much) - on days where you feel you may have let too much methylfolate build up.


    The goal is to feel better but as Pr40 says, there are other snps to address too. So remember that the methylfolate/hydroxyB12 is just the first step. It alone won't make all your symptoms go away. But they should help. Just be methodical in your dosing and don't rush it. Not everyone needs large doses.

  21. The fluoroquinolones (cipro, levofoxacin, moxiflocacin) are big gun, potentially serious side effect antibiotics. I would ask if there are other options. If not, be very watchful for side effects.


    My daughter battled MARCONS - a MRSA-like sinus infection. We tried 7 different abx. Moxiflocacin made her so sick, we stopped after 3 days. We then tried several other abx to no avail. Out of options, we finally, reluctantly, used cipro for 10 days last month and that seems to have gotten rid of the infection. For the first 5 days on cipro, she felt great - energy returned, the issues from the sinus infection subsided. But on Day 5, she crashed and felt awful. Muscle pain, random stabbing pains, severe fatigue, and then tinnitus that got so laud she couldn't hear herself think. We stopped on Day 10, concerned abuot the tinnitus.


    In the 3 days after we stopped, she started to feel much better, but not 100%. So I researched but didn't find a ton out there that was reliable. Then I read Stephen Buhner's book on natural antibiotics and for MARCONS, he recommends three herbs - cryptolepis, sida acuta and alchornea. Cyrptolepis and sida acuta are natural quinilones that interefere with bacterial DNA replication in the same way that the man-made fluoroquinilones do, but with no known side effects. So I started researching the fluorine ring that's added in the pharmacy - it's added to make the drug toxic to the bacteria - making it 2.5 times more potent than the natural herbal quiniliones. But fluroide is a neurotoxin and the body can't easily get rid of it. In my daughter's case, and in cases you read about where people are "floxed" and made chronically ill from fluroquinilones - I believe the nasty side effects are from the body's inability to get rid of the fluoride.


    I came across a few PubMed articles about selenium being neuroprotective and being able to bind to fluoride to help the body get rid of it. Selenium is used in ERs in cases of fluorodosis (fluoride poisoning like when a toddler eats a tube of toothpaste). Selenium also reduces cytokine activity (inflammation) and is a powerful antioxidant. So I gave my DD 100mg of selenium for abuot 5 days and her remaining symptoms went away. I then gave it to her a few times a week to continue the detox process without ODing her on selenium ( you generally only need small amounts and I didn't want to trade one problem for another).


    So if you need to use it, be watchful for side effects, stop the abx if you see bad things and talk to your dr. about using selenium for a short period of time.

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