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Posts posted by LNN

  1. My son is fully recovered from Pans/Lyme. Took a long, long time. But recovery is possible.


    Yes I do think it's worth treating your child for Lyme given these results. My daughter is now working with our integrative LLMD in central CT. PM me (click on my user name and then the "send me a message" option) if you want his name. There is no one path to healing, so no one can say "take this, or do that" - treatment is very individual.

  2. The list of LLMDs that fit your criteria - integrative, MD and pediatric - narrows the list to three that I can think of. I will PM you their names. Whether the pass muster with your DH - well, he may need to be willing to meet with them . All have waiting lists. The three I have in mind all arrived at where they're at by being failed by mainstream standards of care. All three have years of seeing atypical patients and having to cast wide nets to help their patients return to good health. In doing so, you start to re-define previously held, narrow beliefs. You'll have to try to get your DH to accept that they may just know more than him in terms of Lyme.


    I understand how out-there Lymeland can be. When mainstream refuses to fund (or publish) research, it leaves an opening for out-there protocols and claims. But you and your DH might have a better understanding of the controversy, politics and financial conflicts of interest if you read Cure Unknown by Pam Weintraub (recommended by SF Mom in your other post). It's an easy read and could go a long way in giving your DH a coherent explanation of the state of things. You can also google "Embers Monkey Trials" and research the history of the failed lyme vaccine (thus the financial conflict of interest). https://www.lymedisease.org/lymepolicywonk-embers-monkey-trials-part-2-chronic-lyme-disease-treatment-and-persistence/

  3. My kids' CamK's were 179 and 183 and were considered very high - though I do know a few kids who were near or over 200.


    CamKII is a cytokine and activates inflammation. In Pans, it causes a cascade of responses, especially in the basal ganglia and amgydala. The basal ganglia is responsible for emotional regulation, sensory attention and prioritizing input. It's the conductor of the orchestra. When data comes into the brain, the basal ganglia decides if it's important. If it is, it forwards that information on to the area of the brain that processes that information. So decisions - that gets sent to the prefrontal cortex. The hum of the refrigerator - not important. Ignore it. Sensory data that is important? Send it on to the parietal lobe. So when the basal ganglia is inflamed, messages get miscommunicated, fears that would normally be dismissed (did I turn off the oven?) get caught in a loop. Memories that need to be recalled - particularly math facts? It's like someone took the card catalog and emptied it all onto the floor. Cam KII plays a particularly important role in memory.


    Reading the Wiki pages on the amgydala and basal ganglia and CamK II helped me understand how chronic inflammation easily causes all the things we see in our kids.


    Did you run a western blot thru Igenix?


    The thing about IgM and IgG - traditional sources will say that it's black and white. IgM is sign of current, IgG is sign of past infection. But some researchers and clinicians who deal with chronic infections report that IgM will cycle in a chronic infection, going through multiple periods of appearing active and that if other signs point to evidence of infection, IgM and IgG alone can't be used to determine what's "active." I don't have any references for you on this - just what I've picked up over time. So I toss it out as food for thought not as authoritative. I'd say to call the lab as ask your more specific questions. as they often have a doctor available to help and who understands the lab's methods and results.


    Your question about mycoplasma becoming latent - you may like Stephen Buhner's book on treating mycoplasma. Regardless of your thoughts on herbal treatments, he has a very, very in-depth discussion on how mycoplasma behaves in the body, how it can invade immune cells and become invisible to the immune system, rendering IgG and IgM measurements meaningless. Its the best, most in-depth explanation I've ever come across. For someone with your knack for research, I highly recommend it. http://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083/ref=sr_1_2?ie=UTF8&qid=1456434679&sr=8-2&keywords=buhner


    Don't underestimate the MARCONs. It's played havoc with my DD for a year now. I'm currently feeling there must be something in addition that we're missing (which brought me to Buhner's book). But it's still one more thing she's fighting. This paper specifically mentions both mycoplasma and staph as Pans triggers http://www.jci.org/articles/view/80792

  4. If a brain scan could tell you whether you had Pandas or something else, Pandas wouldn't be "controversial". Swedo has done MRIs that show inflammation of the basal ganglia in kids she diagnosed. But I doubt that would convince non-believers and believers wouldn't need to go to those lengths. They'd treat based on clinical presentation and history.

  5. I'd say yes, she absolutely has lyme. IND means the band wasn't dark enough to be called positive, but a fainter line showed up. Most LLMDs will call IND a positive - some antigen was recognized by the body to make that band show up. But often a body that's been fighting a chronic infection starts to lose its ability to mount a robust attack, so you'll see a decrease in antibodies over time, even if the infection is still active. It's like being "a little" pregnant. If there was enough to make a band show up, even if faint, then something's brewing. And since she has so many bands, some of which are tell-tale for Lyme exclusively (31), I think any LLMD worth his/her salt would be treating her right now.


    You may want to review the pinned threads at the top of the Pans forum page that are specifically about lyme. I think there are some links on finding LLMDs in your area. If not, you can try www.lyme.net and click on the link called "flash discussions" on the left of the page. You'll then see a link for "finding doctors" and you can post your location there. Users will then give you suggestions.


    Yes, Lyme can be neuropsych only. You'll find plenty of families who started on this forum thinking their kids were Pandas only to find out they had undiagnosed Lyme. My son was "classic" Pandas from strep but never got well using IVIG or Plasmapheresis. It was only when we found lyme that he finally got well. Good for you for pursuing!!

  6. Cigna covered DS's Pex in '08 but they've since changed their stance and no longer cover it. It didn't give us lasting improvements because DS also had Lyme. I see in your signature you've done Igenex testing. Not sure what else you've looked at in terms of triggers. But as a rule of thumb, it seems that if you've done the logical interventions and the kids aren't responding the way you'd expect, there might be a puzzle piece you're missing.


    Staph is giving my DD a slew of problems and we can't seem to get rid of it. Mold has also given us problems. I totally sympathize with being at wit's end. And I wish I had ideas for you. But all I can say is based on my own experience, I wouldn't pay $26K out of pocket unless you were confident there wasn't an active infection or trigger that would unravel any benefits before you'd even finished paying the bills.

  7. First, please know that not all kids produce strep titers and when you test titers, they peak at specific times after an infection. An ASO titer peaks 1-3 weeks after infection onset. Anti-DNase B titers peak 4-6 weeks post infection. So if you don't test at the right time, you can get normal titer results even if you have/had strep.


    Second, a research paper out of Columbia University was published in December that proves that infections other than strep can trigger the autoimmune response behind Pandas. So EBV, mycoplasma, Lyme, staph, bacterias that cause upper and lower respiratory illness - can all be culprits. So kuddos to you doctor for being willing to consider this.


    You can try steroids but know that if the infection is still active, any improvements you see probably won't last because the thorn is still in the lion's paw, causing inflammation. They helped my son immensely, but he had undiagnosed Lyme in addition to strep-triggered Pandas so the miracle never lasted. A tonsillectomy/adenoidectomy also helped a lot - especially with his tics, because his tonsils were chronically infected. Ultimately, my son had three triggers for his tics - Pandas, Lyme and mold in his classroom. We had to tackle all three before his tics left but he's been healthy and off all medication since. The tics were because his body couldn't get rid of the toxins that the dying bacteria and fungi were throwing off.


    My daughter had EBV - l-lysine worked wonders for her. Monolaurin is also a good option.

  8. We did pex and within 6 weeks, DS was worse off. IVIG made him a lot worse. We eventually found lyme and mold were issues in addition to strep.


    I hope the second time's a charm for you! But if not, you might consider other infections/triggers. My doctor's mantra is when the patient doesn't respond the way s/he should, you're missing a piece of the puzzle.

  9. I can understand your reasons for wondering about Lyme. It seems reasonable to investigate.


    But...if the mom doesn't have access to long term treatment options by a knowledgeable LLMD, then I'm not sure it's worth it. Without insurance or the financial means to pay out of pocket, without the oversight of an LLMD, you'd need to be willing to really, really educate yourself and pursue a very methodical herbal/natural route. Stephen Buhner's books are great. But you need to be the kind of person who can do research and play a really active role. If your friend is inclined to accept an ASD dx and isn't being receptive, then I'm not sure she'd be able to handle the very significant load of being the Lyme advocate/case manager.

  10. I'm a bit confused by your post. Who's suggesting you supplement with B12 for a COMT genetic issue?


    COMT is one of the genes that regulates how quickly your body degrades (uses up) dopamine and adrenaline. So if you're homozygous, it means you stay jacked up on adrenaline longer and stronger than people around you. This creates a "fight/flight" response. One of the tings that helps a slow COMT gene work a little better/faster is niacin (vitamin B3). Your VDR Taq gene also influences your COMT gene because it affects how much dopamine you produce. Your MAO-A gene also controls how quickly you degrade adrenaline and dopamine, so that gene's status also plays a role in what you decide to supplement. So does diet.


    I've never seen B12 discussed with COMT. I usually see it discussed along with methylfolate (B9) for the MTHFR gene. So I'm confused.


    Also, the thing to remember with all genes is that having a mutation doesn't mean that mutation is expressing itself or is active. You have a higher potential for issues, but it doesn't automatically mean you have that issue. Behaviors have to be considered. Plus you need to look at all the genes together, not individually.


    I wouldn't automatically give a supplement simply based on a genetic result. But I would use the genetic results to guide you on new supps to consider, and then factor in current behaviors and nutrition results to decide if you need them and how much to try.

  11. I'm sure there are several causes but the one I know about is mold exposure. You can find info at www.survivingmold.com but here's why Dr Shoemaker (mold guy) thinks it's relevant to mold:


    TGF Beta-1 is a protein that has important regulatory effects throughout innate immune pathways. This protein helps control the growth and division (proliferation) of cells, the process by which cells mature to carry out specific functions (differentiation), cell movement (motility), and the self-destruction of cells (apoptosis). The TGF Beta-1 protein is found throughout the body and plays a role in development before birth, the formation of blood vessels, the regulation of muscle tissue and body fat development, wound healing, and immune system function (especially regulatory T-cells).


    TGF Beta-1 can impair T-regulatory cell function, which in turn contributes to the activation of autoimmunity, yet TGF Beta-1 also plays a role in suppressing autoimmunity(!). TGF Beta-1 has become important in the exploding incidences of childhood asthma, raising the tantalizing issue of remodeling due to biotoxin exposure. The EPA says that 21% of all new cases of asthma are due to exposure to Water Damaged Buildings. If an individual develops wheezing after exposure to a water damaged building, look for remodeling to be the cause. Remodeling means "something" happens that the airway changes to be more reactive and in need of medications to reduce wheezing. Neurologic, autoimmune and many other systemic problems also are found with high TGF Beta-1.


    There's a definite link between this and auto-immunity.

  12. Seeking - I just saw one of your posts on MARCONS where you say your son is allergic to sulfa drugs. If so, even tho his CBS gene is normal, there may be other genes that are making it hard for him to neutralize sulfurs and ammonia by-products. You're giving him tumeric - which is high sulfur. You may want to review his meds and supplements to make sure you're not adding to his ammonia/sulfur burden.

  13. Seeking - to add to your line of thinking...The latest research study on Pandas out of Columbia Univ. http://www.jci.org/articles/view/80792

    does show that staph is one of the bacteria that can trigger PANS (about midway thru the paper). It also shows how the path thru the BBB is thru the olfactory bulb. So chronic sinus infection does become a likely culprit for a PANS flare.


    I'm not a fanatic follower of Shoemaker, and it's true there are no robust studies (but I hate when I see in some mainstream write "there are no clinical studies to support xyz - because no one will fund a clinical study unless there's a profit potential of a drug at the end of the study). So a valid mark against him but one that I don't use as grounds to dismiss an idea either. He does have a large database of patient responses, which are obviously biased but probably have merit for a certain population of patients. He has published some peer reviewed papers and does seem to have some degree of evidence-based defense of his arguments. Some of what's on his website has been immensely helpful for my daughter's health. But I do agree you have to take it all with an eye toward balance.


    If you do find info an re-balancing sinus health, please share. Sinus health is my DD's nemesis and our MARCONS treatments have been helpful but not curative.

  14. I don't know that this is an unusually high number of mutations. I've seen more than this for a number of kids and even I have more than this. Your son does have a few that will make heart disease a potential problem (ACE, NOS & SOD), especially since high ammonia is an issue.


    But the good news is I don't see a ton of mutations on the genes that have bigger impact on mood - other than COMT. His MTHFR, CBS and VDR Taq are normal, and these are biggies for mood. COMT is the warrior/worrier gene and being homozygous, along with +/+ for MAO-B, means he will stay ramped up on epinephrine and dopamine longer that others around him - making him more prone to anxiety and anger. But MAO-B has lesser impact than MAO-A. It looks like he's more likely an over-methylator rather than an undermethylator, so you might see benefit from adding Vitamin B3 to soak up some extra methyl donors. B3 comes in several forms. If you use niacin, you'll periodically see a "niacin flush" - a hot flash where the capillaries dialate rapidly. It's harmless but uncomfortable for about 20 min. The flush also releases histamine, causing an itchiness. Niacinamide is a form that won't cause a flush, so it's the form I'd recommend. My son is an over-methylator and niacin makes him much more even tempered (he takes 100mg niacinamide in addition to what's in his B Complex vitamin).


    I believe SOD plays a role in sulfur and ammonia, but you'll need to double check me. It's been awhile since I've looked at this. Also look into GAD and FUT, as I recall some link with gut health.


    In terms of high ammonia, I can't speculate on what's causing it to be high. But a supplement that can help is l-ornithine, an amino acid. There are three amino acids involved in the urea cycle - arginine, ornithine and citrulline. All three recycle into each other but ornithine is the rate-limiting factor in the cycle. Ornithine uses ammonia to do it's thing, so adding ornithine helps the body soak up more ammonia. It's used in ERs for cases of hyperammonium. You can buy l-ornithine alone or in combo with one or both of the other two aminos listed above. It's a popular supplement in body building because breaking down muscle increases ammonia. We used a combo supplement that had 250mg of ornithine. We started with 3x/day because my daughter had an adverse reaction to cipro and she stopped peeing. She was so weak and toxic. But once she started feeling better, we tapered down to once a day until she no longer needed it.


    Yucca root is also great for reducing ammonia, but it's slightly estrogenic, so it shouldn't be taken for more than 3 months at a time. Hibiscus Sabdarifa (aka Roselle) is also a good herb for reducing ammonia and lowering blood pressure. You can find research on all three (ornithine, yucca, roselle) on Pubmed. Here are some links on general methylation issues




    You can go to Youtube and search for videos by Amy Yasko, Kendall Stewart and ? Rawlins (can't recall his first name).

  15. Mike,

    The skin sensations are something my daughter has been experiencing for the past few months. In her case, her skin feels itchy or painful like there's fiberglass insulation on it. She only feels relief when bathing. On occasion, she's also had intense sound sensitivity for a few hours at a time, where whispers have sounded like someone was shouting. Sometimes, she swears we've run out of hot water - the water feels cold to her even though it's quite hot and steam is gathering on the bathroom mirror. It seems that her chronic sinus infection has triggered a PANS reaction and is effecting her parietal lobe - the part of the brain responsible for sensory translation. It's causing her to have abnormally heightened response to sensory inputs. This isn't a common complaint among pandas kids, but I do know of a handful of kids who've had this issue. I've also read that it can be a symptom of Lyme - though it's not specific to Lyme.


    If you do suspect Lyme, please read through the pinned thread of discussions at the top of the Pandas/Lyme forum. You'll find some helpful links to testing and explanations of test results and shortcomings. If you do get tested, know that most tests are unreliable and do not look for two antibody responses that are unique to Lyme. Back in 2000, they tried a Lyme vaccine and people who had the vaccine would test positive for Bands 31 and 34 (?). So the CDC advised labs to not test for these bands or they might cause a high number of false positives. But the vaccine was a failure and was pulled off the market after 18 months. But the labs never resumed testing for these tell-tale bands. Only Igenex and Stony Brook test for these now. So if you're going to get tested, I strongly suggest you use one of these labs.


    It sounds like you need to have some tests done by a doctor who's willing to investigate chronic infections. Integrative doctors and osteopaths seems to be more inclined to do this for their patients. Pandasnetwork.org has a list of doctors by state who may be able to help.

  16. I can sympathize. We've had to endure rages and intense behaviors that have tested our marriage (and I have a supportive husband) and made me feel like a total failure as a mother. For DD, it seems that mold and now MARCONS is wreaking havoc and getting rid of the MARCONS has been nearly impossible. Have you done any of the mold blood work listed on Shoemaker's www.survivingmold.com site? Or had her nasal swabbed for staph of fungal infections? Dizziness, rages, sore throat, these all come with the MARCONS for DD.



  17. O'Hara is awesome. So is Dr M, also in CT (PM me if you want his info). If your son is in remission and only on abx as a prophylactic, then you might like Stephen Buhner's book Herbal Antibiotics http://www.amazon.com/Herbal-Antibiotics-2nd-Alternatives-Drug-resistant/dp/1603429875/ref=sr_1_4?ie=UTF8&qid=1452808269&sr=8-4&keywords=buhner


    I've had good success with Alchornea - one of the herbs he recommends.

  18. Yes, Nancy - it's due to methylation issues. NAC is high sulfur and works its magic on the transsulfuration pathway - the part of the methylation cycle that serves as the body's detox/garbage take-out highway. The gene that regulates entrance into this pathway is cystathionine beta-synthase (CBS). When you have CBS mutations, you don't break down sulfurs well and you also tend to run high in ammonia levels (ammonia is neuro-toxic). Having this defect also puts a strain on your detox pathway, which makes your liver work harder.



    When you have a CBS mutation (that's turned on, or expressing), and you consume high sulfur foods (sauerkraut, fermented foods, tumeric, NAC, alpha lipoic acid, glutathione related supplements, MSM, the antibiotic Bactrim) it adds to your sulfur and ammonia burdens. I think the higher ammonia may have been part of my unusual depression, but that's speculation on my part. If you have a CBS mutation and do need to use something high in sulfur, Yucca Root or l-arginine can be used to help break down ammonia and molybdenum can be used to compensate for some of the BH4 depletion caused by the sulfur.



    So people who have normal CBS genes won't have this issue and NAC probably has other mechanisms of action that help with OCD. Unfortunately, 3/4 of my family have CBS issues, so it's not an option for us. I only chime in on threads like this just to let people know the response is very individual, so that they know to be aware of potential down sides. But I don't mean to discourage people from trying it.

  19. You might want to get tested for mycoplasma pneumonia - which can also be a Pandas/Pans trigger. That seems to match many of the symptoms you describe. Azithromycin is a good abx for mycoplasma but needs to be taken for a month or more.


    (BTW - Nancy - azithromycin actually has a very long half-life - 36 hrs. Which is why you can take 5 days of zith and be covered fro 10 days. Regular augmentin and most other abx have half-lives of 4 hrs or less and augmentin XR is good for 12 hrs.)


    I agree with Nancy that NAC is a great mucus thinner and is good for some people with OCD. But be on the look out for depression if you take it for any length of time. I took it for several months and became very depressed (not typical for me) and my liver enzymes tested alarmingly high. I stopped the NAC and the depression lifted and the liver panel came back normal. So if you take it, just watch for signs of mood changes and possibly have your liver enzymes tested (ALT/AST blood test) if you stay on it for any length of time.

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