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Posts posted by LNN

  1. COMT and MAO degrade adrenaline and to a lesser extent, dopamine. COMT is sometimes called the "warrior/worrier" gene. People who have a normally functioning MAO are calm under pressure, great in a crisis. People who have active or "expressing" COMT mutations have trouble degrading or reducing the levels of adrenaline after they've been faced with a fearful situation. They take longer to come out of a fight/flight/faint response. Having a mutation doesn't necessarily mean it's expressing. But if you have a Pans child, then chances are, this plays a role in some of his responses to stressful situations.


    The good news is that Dr Yasko's work focuses on ways to manage roadblocks. Niacin - vitamin B3 - helps COMT degrade adrenaline. So supplementing with a little extra niacin (50-100mg) can give more of a "raw ingredient" that COMT needs. In a way, it helps COMT work a little faster, helping people calm down a little faster, a little more "normally". Regular niacin has the unfortunate side effect of causing a temporary, harmless flush for about 20 minutes after you take it. Flush-free niacin avoids that side effect. So you want to make sure you get flush-free niacin. If your son is too young to swallow pills, you can crush one and sprinkle the powder into food. When my daughter was younger, the creme of an oreo was sweet enough to disguise the taste.


    MAO-A also helps degrade adrenaline and to a lesser degree, dopamine. So MAO plays a role not only in that fight/flight response but also in anger ( when a mutation causes MAO to spin too slowly and you stay rev'ed up with too much adrenaline/dopamine) or depression (if MAO spins too quickly and you end up with too little dopamine). Copper helps MAO degrade adrenaline. Copper is a little trickier to supplement, as too much can cause problems, including a zinc deficiency (zinc is important to the immune system). So if you supplement copper, you don't want to exceed 2mg. You also want to avoid MAO-Inhibitors. Cough medicine, some OTC cold medicines can be MAO-I's.


    I've found that these "helper" supplements work well in working around the COMT and MAO roadblocks in terms of anxiety and anger. For the most part, I used niacin and didn't try to supplement for MAO issues. Methylfolate and hydroxyB12 supplements can help work around MTHFR issues. But dosing can vary widely. Some people take 800mcg - 5mg of methylfolate. My daughter only needed 67 mcg every other day. More than that made her very bipolarish. So I'd only address one snp at a time and be particularly methodical and slow when it comes to MTHFR.

  2. My 14 yr old son has been Lyme free, tic free and med free for several years. This spring, he got braces, and his eye blink came back. It doesn't bother him, it isn't obvious unless you look for it, and he's fine in every other way. So I've left it alone. I'm hoping it goes away when he gets the braces off in a few months. Our LLMD feels that the braces may be putting pressure on facial nerves. So if your son has braces, maybe that's a factor?

  3. I'm so glad your DD has enjoyed such a long remission! I don't know of any warnings about suddenly stopping antibiotics. We did wean my son, but I think it was an abundance of caution because he had Lyme and had been on several abx at the same time and had regressed a few times when we first tried to stop them. In hindsight, the problems were due to mold in his school building, which went away when he matriculated up into a higher grade in a different building. Once he was in a new building, he was able to stop abx entirely.


    For what it's worth, I used to suffer from periodic chest pains as well - from the time I was in my teens until my 40s. I described it to my doctor as a vague pain around the area of my heart. Not a pinpoint pain - more of a general area pain, a tightening, like a headache, except in my heart. It would come in bursts - the feeling would come on a few times in a week, or a few times in a month, and then I'd go 6 months with no issues. Turns out it was a magnesium deficiency. When my kids became ill with Pans, I started them on several supplements, including magnesium. I also started taking it and then realized that the pesky chest pains had stopped and never come back. Last year, I ran out of magnesium and went a month or so without it and the pains returned.


    So I think it's wise to have a medical evaluation to rule out anything serious, but you might also look into something more benign and less likely to be tested - a mineral or vitamin deficiency.

  4. We use a blend of 3 herbals - cryptolepis, sida acuta and alchornea - all recommended by Stephen Buhner in his Lyme and co-infections books. We get the blend from Woodland Essence http://www.woodlandessence.com -

    listed as C.S.A. on their site. But you can also buy any one of them separately if you prefer.


    Here's some research on alchornea




    Lots of good info on all three herbs in Buhner's books. Herbs tend to be "earthy" and bitter. So to get my kids to ingest them, I put a dropperful into an empty gel capsule (from amazon). I give 1-2 capsules 3x/day for 5-7 days or a few days past the time they feel better - whichever is longer.

  5. Yes, remission is possible and is often achieved. You won't hear about it on forums because once people are healed, they move on and no longer live on forums. My son was stricken with Pandas and Lyme at the age of 6. He underwent many, many treatments and finally came out on the other side. He's 14 now and Pandas hasn't significantly impacted his life in about 3 years. About once a year, some nasty bacterial bug will pass thru school and he'll come home not feeling "right". He'll take an herbal antibiotic for several days and the Pandas stuff never has a chance to mushroom into something. Other than these times, he's 100%.


    I think the key is find/treat your trigger, realizing it may not always be strep and it may not always be just one thing. Along the way, my son had to battle strep, Lyme and mold, plus some nutritional deficiencies. Now that these are addressed, he's able to enjoy physical and mental health.


    Remission doesn't just "happen" - just like anyone who achieves great things, like an athlete or entrepreneur, reaching a goal takes a lot of hard work and perseverance. But it is absolutely attainable.


    Best of luck!

  6. Vik or Sheila,

    Who is Dr. N in CT? Dr. Nancy O' Hara? If not, would you mind sharing this doctor's info with me? My daughter is back with a vocal tic that is keeping her away from school again. Sadly, we didn't see much progress with Dr. B, and I am looking for experienced doctors in the area. It is so tiring, and frustrating when almost every single doctor's visit leads to a dead-end!


    I don't know about a Dr N in CT but we see Dr M in central CT for my Pandas/Lyme kids. We have experience with Dr B (and other Pandas doctors) but it's been Dr M who's been able to look at multiple triggers and get my kids well. In my family, I've seen strep, Lyme and mold all cause tics. Treating these issues has gotten rid of them.


    If you'd like Dr M's contact info, PM me. He does have a long waiting list but gives priority to kids, so if you can take any available opening, you may be able to get in in a matter of a month or two.


    When you say that these genes are like a dimmer switch, are you saying that they can be turned back in the other direction as well? Like if things get balanced, or something, sensitivities and reactions can still be reduced?


    You can't change your genes. Your daughter will always be compound hetero MTHFR. But how that impacts her can be influenced by what goes into her body (food, supplements, meds). So the potential for issues, the tendency to react to certain things more than other people, will always be there. But you can help an MTHFR mutation work more efficiently, closer to "normal" by not giving the body folic acid that needs to be converted (inefficiently in her case) to methylfolate. Instead, you can give methylfolate directly - so the conversion her body can't do has already been done for her. Then her body will have a sufficient supply of methylfolate to work in partnership with the B12. When this balance is reached, many people see histamine levels balance out and allergies lessen or seem to disappear.


    Amy Yasko describes it as helping the body work around road blocks. The road blocks will always be there. But once you help the body build a detour, you can lessen the impact and not be a hostage to those road blocks.


    Each of the 30+ methylation genes Yasko talks about have work arounds you can try. Once you get the whole picture, you can figure out how those 30 genes affect one another and zero in on the best supplements to take or foods/supplements to avoid. It's complicated. Takes lots of study and some trial and error. And as a child grows, the "perfect" balance or dose of something tends to change. So you sometimes have to go back to the drawing board. But far better (IMO) than pharmaceuticals, because you're working with the body.

  8. From your post, it sounds like you need to delve into the following questions:

    1. What is your daughter's VDR gene status - not everyone tolerates Vitamin D supplements, and knowing the VDR status can help you understand how.why your daughter may respond to D supplements - this answer comes from interpreting 23andMe raw data
    2. What is your daughter's MTHFR status - again from 23andMe tho you can also test this gene thru Quest or Labcorp. MTHFR is te gene that affects how well your body converts folate or folic acid into methylfolate. Methylfolate works with B12 to produce ATP (energy) and indirectly, serotonin. People with MTHFR mutations don't do well with folic acid supplements (in most multivitamins) which is a synthetic version of folate (found in greens and other foods). They aren't efficient in converting this supplement into the form the body needs. So the unconverted stuff can pool up, causing behavioral or health issues. There are interim folate-related products that are produced as the body converts folate into methylfolate (e.g. folinic acid) and it's worth understanding the differences between the forms as you set about interpreting 23andMe raw data.2
    3. B12 - there are several genetic issues that influence what form of B12 the body handles best. MTHFR and COMT are the big influencers, but MTTR, MTR, MAO also play a role. It boils down to whether the overall genetics work in favor of being an under or over methylator. Some people who could use a few extra methyl donors do well on methylB12 (methylcobalamin) but everyone else seems to do better on the adeno or hydroxycobalamin forms of B12.
    4. Allergies - An improper balance of methylfolate and B12 greatly influences how much histamine your body releases (diet and environment also play a role). My daughter's allergies greatly diminished once we got the balance right. While I'm not against changing diets to help with allergies, addressing methylation can sometimes make diet changes unnecessary.
    5. You ask about these things appearing suddenly - keep in mind that genes can be switched on and off be in-between. Being born with a genetic mutation doesn't mean that mutation is "expressing". What you put into your body - diet, supplements, environmental toxins - influences how well your genes express. Genes are like a dimmer switch - what you put into the system can alter how well that switch expresses light. Genes are not fate. They can be influenced. That's what epigenetics is all about.
    6. The Cunningham Panel - looks at 5 markers that suggest an autoimmune reaction and inflammation. These markers only seem to be high when antibodies are attacking certain regions of the brain - regions that play a role in Pans symptoms. But these antibodies can be produced in response to more than just strep. Lyme and mycoplasma are common Pans triggers and even Cunningham's research in the 90s identify Lyme as a possibly culprit for a Pans response. High Cunningham results suggest Pans as your cause of behaviors/symptoms, but it doesn't identify which infection is triggering the autoimmune response.
    7. You ask if your daughter's reactions sound like Pans. Yes, they absolutely do. It sounds like OCD and intense anxiety, fear, flight responses. Her system is sounding alarms and she isn't able to tell her brain that she's safe.
    8. You ask about outside services. As a mom with two young children, I wouldn't want to discourage you from getting help. But do realize you may face a lot of pressure to medicate behaviors that are seen as non-responsive to behavior therapy. I can tell you that my 11 yr old, who has a lot more reasoning skills than a toddler, was unable to moderate or rationalize away for irrational fears. They consumed her and no amount of therapy made a dent in it. It wasn't until she was put on 2 antibiotics and a month of prednisone that she was able to fight back against the OCD and fears. Until we gave her that support, the therapist was just spinning her wheels. The pediatrician was on the fence about Pandas. But once they saw the night and day change in my daughter when the Pans specialist put her on antibiotics, they were blown away. They had never seen such a dramatic change in so short a time. These are kind, well-meaning professionals. But Pandas is one of those things that needs to be seen to be believed. It isn't until you see a child emerge out of madness that you have the AHA moment and become a believer. So take advantage of services that can support your daughter's development and give you a reprieve, because your own emotional well being is essential. But do go into it with realistic expectations and and an understanding of where you personally stand on behavioral medications. Because there will like be a lot of pressure to add pharmaceuticals.

    Best of luck!

  9. Most people would tell you to do your homework (as you're doing) and then trust your gut and your experiences as to whether Lyme is your culprit and whether you should continue down that path. Labcorp is among the least reliable when it comes to results - at least from what I've gathered in my years of Lyme research. But if you've done the protocols - rotating abx, combo abx, etc - and haven't seen results, then I can understand your reservations about cross-reactivity.


    But here's my take away - these tests are showing an immune reaction to some sort of infection. And you have enough of a clinical picture to believe that some sort of infection is triggering neurological and psychiatric symptoms. So if not lyme, if treatment for strep and myco haven't brought you sustainable gains - then what's the trigger. And that may be a really hard quest.


    I can't tell you if you should stay the course or not. I can only share one word of caution/encouragement. Most people on this forum know me from my years of advocating for my son. My daughter was always, in my mind, borderline Pans and was more of a mold story. Then, last year, she became seriously ill, but with symptoms that went beyond my understanding of Pans. It included enormous sensory issues, an inability to wear clothing due to "neuropathy" for lack of a better word, hearing and taste disorders, and a temporary inability to walk accompanied by elevated ANA. A short course of antibiotics helped her walk, but did nothing for her other symptoms. Herbal antibiotics kept issues manageable but didn't seem to make a dent in the overall picture. A 5 day course of prednisone did't make a dent. So after months of looking for that needle in a haystack, we stopped everything and started treating DD's issues as perhaps "garden variety" mental health issues. Well, the s**t hit the fan and DD fell off a cliff. What I thought were ineffective treatments (e.g. the herbal antibiotics) were actually the only thing that was keeping my DD from going totally insane. When she did fall off the cliff, she developed severe anorexia, panic attacks and became a basket case - and it all happened in the blink of an eye. Faced with hospitalization and a feeding tube, we were able to get combo abx, a month-long steroid taper and a team of medical, therapeutic and school staff all on board without the usual skepticism. The turn around was thankfully miraculous, though the healing will take a long time.


    So my only caution is to not throw the baby out with the bath water. You may not have gotten the breakthrough you're seeking, but the things you have on board may be doing more than you think. It's discouraging to not know what infection you're trying to treat. It can make you question your course. But don't quit before the miracle. Those labs are showing something. Keep fighting for your child.


    I hope you see good things from IVIG - good luck!

  10. What you're experiencing is something called a herx, or herxheimer reaction. It was originally used to describe how syphilis patients got worse before they got better, due to the toxins being released by the dying syphilis bacteria. It's a term used commonly in the Lyme community, but also in the Pandas/Pans community to describe a similar response, either due to toxins released by die-off of bacteria or from the resulting inflammation. As long as it's tolerable, a herx is seen as a positive sign that the antibiotic is killing something and you're seeing glimpses of your real child.


    However, the thing is to try to keep the inflammation in check. Inflammation can do damage (usually temporary). And it can worsen symptoms. So it seems like the clindamycin is killing something the other antibiotics didn't touch. But it's also causing inflammation in the process, and that's probably why you're seeing that rollercoaster response. It's probably a good idea to stay the course if you can, and stay on the clindamycin. If you reach a place where the gains seem to stall, then some doctors will then either rotate to another antibiotic or add a second antibiotics.


    Don't be fearful. If you're seeing glimpses, then she's still in there, and you can get her back.

  11. Not in Maine - southern New England. Glad to hear he had a better day yesterday. Is he still on the minocycline?


    FWIW, my DD started a new nasal spray on Friday for her Marcons - vancomycin + itraconozole + edta. Saw an increase in flu-like pain, muscle pain, stuffiness yesterday. Saw big increase in OCD and anxiety today. So back to motrin every 6 hrs, and re-scheduled our day to remove things that are stress triggers. That seemed to help. Pretty sure it's herxing related. It does muck things up for school, to be sure. Makes getting thru the day, doing well on exams, so much harder. But I know from seeing my Lyme son go thru this for 2+ yrs, it's like a hurricane. The sun comes out afterward, and after the damage is cleared, there's rebuilding and she'll hopefully be in a better place.


    DS went from being a year behind academically to several years ahead. I went from having to help him thru every aspect of homework, had to read to him because he couldn't read and retain at the same time, had to heavily tutor and coach him for 5 yrs. Now, 3 years into recovery, all I have to do is nag him to get off the computer and do his homework. I have no involvement in the actual academics whatsoever and he's an honors student (9th grade). But to get to this point took enormous work and many set backs. So don't lose hope. They can get better.


    Do keep me posted. I can totally relate to the insanity you're living and the stress and pain you're feeling. You're not alone.

  12. It might help you wrap your head around what's happening by considering that you have PANS, not Pandas. Pandas is an autoimmune response to strep. Pans is the same thing, except in addition to a strep trigger, it can also include Lyme, co-infections (e.g. Bartonella), mycoplasma, and viruses. Both Pans and Pandas come with the OCD, anxiety, tics, sensory, urinary issues, brain fog, temporary loss of academic skills, etc.


    So you may have resolved the Pandas triggers, but by treating the Lyme, you're now experiencing a Pans type of herx, which is more neurological than physical, but stems from the same toxins and inflammation of a herx. And yes, yeast die-off can contribute to the herxing.


    There are a couple of options. One is to focus on detox - bentonite clay or charcoal as a binder of toxins (taken away from any antibiotics, supplements or other medications), epsom salt baths if tolerated (some people find them relaxing, others find them irritating). Motirn or tumeric or a hogh quality resveratrol for anti-inflammatory. Alka-selzer gold (must be gold - available on Amazon). Taking yucca root or ornithine can help with the yeast die-off. Yeast die off releases aldehyde, which gets broken down to ammonia - a neuro-toxin. Yucca and ornithine can help lower/eliminate ammonia.


    Another option, which can be done instead of or in addition to the above (with your doctor's ok), is to either reduce the dose of your antibiotics or pulse it - i.e. take them 3 days on, then 4 days off, or take them 7 days on then 7 days off). This gives your body a chance to rest and clear herx byproducts away between waves of antibiotics.


    If you're interested in using herbs, you can also consider Dan Shen http://latitudes.org/dan-shen-become-important-treatment-pandaspans/

    which can help close the blood-brain barrier and reduce Pans symtpoms. At your age, I'd take the higher end of a dose (e.g. 1/2 to 1 tsp 3-4x/day).


    Also, be aware that for some with Lyme-triggered Pandas/Pans, IVIG is helpful. For some, it produces a pretty significant herx. You're basically super-charging your immune system and it will attack the Lyme using donor antibodies - antibodies your own body may not have been able to make enough of. So it could cause a lot of inflammation while the flood of new antibodies attack the Lyme infection. Managing inflammation will be key.


    Will you be able to return to school (I assume you mean in January?) Hard to say. But from my own experiences with two Pans kids, there's no way to get healthy without going through the valley of death. Trying to go back to a normal life won't be possible until you tackle the Lyme. So simply stopping Lyme treatment might buy you a month of two. But your Pans symptoms probably won't resolve until you push through the Lyme treatment. You can do so in a gentle, slow manner to minimize herxes, or you can go for a full onslaught of treatments, but one way or the other, you will probably have neuropsych symptoms until the thorn is out of the lion's paw for good.


    I do hope you're taking a good probiotic (at least 30 billion CFUs) taken 2 hrs away from antibiotics, to help your gut health.


    The good news if that yes, eventually, you can get back to a normal life. It took my son several years to beat Pandas/Pans and Lyme, but he's been off all medications for 3 years and now only gets a slight "off" feeling when he gets a bacterial infection in the winter. A round of antibiotics or a week of herbal antibiotics gets things right again and normalcy returns. So have hope. It may take longer than you wish, but once you get rid of all underlying infections, you can get your life back.

  13. We did one IVIG. It was a negative experience because DS had undiagnosed Lyme and it triggered a long and intense herx, with lots of behavioral issues. But it didn't do any permanent harm. Just lots of inflammation that eventually calmed down with Lyme treatment.


    Your situation is of course much more complex and I can't give you any insightful advice. One IVIG would presumably boost her immune system and might help her fight those persistent infections - provided your able to manage inflammation and any behavioral consequences in the aftermath. But I'm assuming here you wouldn't be dipping into essential future medical funds to pay any co-pay. If you were looking at any significant out of pocket expenses, I might say you'd be better pursuing the Buhner route. But if the cost isn't the issue, I might do both IVIG and continue the herbs. Buhner's herbal recommendations have also been very helpful here


    Best of luck - and I hope you do get an insurance reprieve. It's easy to vote to repeal something when you know it won't actually happen. But to have your fingerprints on legislation that will take healthcare coverage away from millions of people who vote - well, that may be a different reality. How things actually play out may be as unpredictable as yesterday was. Hopefully, it will be better than you fear.

  14. Totally hear you - have been in your Pans/Lyme/mold shoes with two kids. And we're just coming out of close call with hospitalization for anorexia. Like you, I resisted psych meds. We also see Dr M.


    I agree with momma2alex - could be the mino. Maybe stop it for a few days, add charcoal to absorb toxins, add magnesium or stool softener or senecot or aloe juice to encourage daily BMs. Motrin every 6 hrs.


    When my DD fell off the cliff in Sept., Dr M prescribed a month-long steroid taper (see https://www.pandasppn.org/ppn-steroid-therapy-use/)

    and it was a game changer, even tho chronic infection and possibly lyme are in the picture. The inflammation had gotten so out of control that we needed to use high dose steroids to bring things under control. The not eating was by far more dangerous than anything else (she would also gag and run to the sink whenever food hit her mouth). Within 36 hours, she started to turn around. The OCD that was keeping her from eating got weak enough that she could start taking in some calories again, and that saved us from the hospital.


    If you do end up in crisis/ER, just stay focused on the eating and the OCD. I was amazed at how much medical support we got from the pedi, the school, the therapist - even tho none understood Pandas. Because they all understood anorexia and the urgency. 2 days after we started the steroids, we saw the pedi and she was amazed at the turn around. While she was tolerant of the Pandas diagnosis before, the changes she's seen in DD over the past 2 months has made her more of a believer. Same with the therapist. Its one of those things that has to be seen to be believed.


    PM me if you need anything. I've been in your shoes - still am to some extent, just not in crisis anymore. It's hard to hold it together when no one else you're dealing with understands and the whole thing rests on your shoulders.

  15. Sorry for the delay. I connected with a friend in NM whose children have Pandas/mold issues but unfortunately, she couldn't recommend anyone local. They travel to CA for their doctor. Your best bet is to contact www.ilads.org for some recommendations or Lymenet http://flash.lymenet.org/scripts/ultimatebb.cgi

    and ask under the "seeking doctor" section.


    Stick with it. Treating the right infection is the key to turning things around.

  16. I think you're right to question the 10 week (tho I was told by our IVIG dr the half life was 3 weeks, but regardless, I agree with your reasoning on doing another test 5 weeks later). But my son was in dire straights and the IVIG response was so severe, I could never have imagined waiting an additional 5 weeks to retest and another 1-2 weeks for results. As it was, we had to wait for an appt with an LLMD. Within a few weeks of starting combo abx (opposed to the monotherapy he'd been following for 2.5 yrs), we saw improvements - and unlike previous improvements, these stuck. It was the first time in 2.5 yrs he sustained an improvement. He continued to improve (albeit with herxing and wrinkles like mold in his classroom) with every change up in treatment and was able to become symptom-free and med-free about 3 yrs ago. So in his case, the results at 10 weeks were from his own antibodies and the proof was in the pudding.


    But if you can stand the delay, then a 10 and 15 week test would probably make you feel like you were on more solid ground. I'd just caution that in my experience, things usually end up being clear as mud and what sounds like a great plan sometimes turns out to lead to more questions than answers. At some point, I always just had to go with my gut and then come up with a different plan if my gut was less than accurate. But I do appreciate your concerns about the babesia meds and taking steps to avoid using them needlessly.


    The lyme treatments aren't as toxic IMO. You have leeway in various abx and can often use ones that are less toxic (avoid fluroquinolones and gentamycin in terms of side effects and toxicity). Herbal antibiotics as an adjunct therapy is also very helpful and carries far less risk. Herbals are also an alternative for the babesia treatments. Better tolerated and perhaps more systemic. Stephen Buhner's books offer fascinating, geeky, well-researched info on the infections and the herbal options.


    As for extensive - yes. No quick fixes. 2 yrs for DS. But very worth it for him.

  17. Your immunologist is so seriously wrong on this one. I usually try to temper my responses, especially to someone I don't know. But 3 bands positive on a traditional western blot, combined with the brief description of history - your son needs to be treated for chronic lyme disease. The 5 bands are CDC criteria for Surveillance not for diagnosis.


    Please read the book Cure Unknown by Pamela Weintraub - and learn about the history and politics of Lyme. You will be outraged by the time you're done - and so motivated to tackle the possibility of Lyme with renewed determination. It's an easy read - not technical or dry. Weintraub is a science writer for Discovery magazine and her family battled Lyme. She does an excellent job explaining why things are the way they are and how to make sense of the path to take.


    Mycoplasma is a common co-infection of lyme and the fact he has other viruses suggests his immune system is just overwhelmed, so the landscape is ripe for multiple infections to set up house and become entrenched. If you can post the general region of the country you're in, I can offer you some suggestions on finding a lyme literate MD. (LLMD)

  18. For my kids, even the one who had tics, steroids were a huge relief (tho it didn't do much for the tics one way or the other). Some parents in the Tourette's community say that steroids for their non-pandas kids can make tics worse. Some kids who have Lyme as the trigger could also react unexpectedly to steroids.


    Since it's only 5 days, I'd probably see it through. But also don't put a disproportionate value on the steroids response. Some people believe that if your child doesn't respond well to steroids, it can't be Pandas. Or it means x or y or z. That's not true. There can be many reasons why a body reacts unexpectedly. His reaction is a clue, but not a clear, absolute proof of anything.


    Wish I could give you better insight. I might suggest additional blood work - either Igenex labs Lyme test, a viral panel or testing for mycoplasma, which is also a common Pans trigger.

  19. You can call Igenex and ask why they don't factor in Indeterminates into their overall proclamation of results. I think they report on indeterminates because they realize these are meaningful but they may have to use CDC surveillance criteria when making a final result determination. Not sure. But an indeterminate in most LLMDs minds is the same as the band being positive. Something made that band show up, even if the immune response wasn't strong enough to turn it the "right" shade to be called positive.


    Using this reasoning, your son has 6 Lyme markers - so I'd say you'd be on solid ground arguing there's something there that needs to be treated. Was this test done pre-IVIG? If so, it may be worth repeating 10 weeks post-IVIG - once donor antibodies have disappeared but still while the body's own immune system is still stronger than it was prior to IVIG. This is when my son's Igenex lit up like a christmas tree.


    I can't speak to the FISH but would say it seems babesia may be worth treating. Yes, you can have a co-infection without having Lyme, especially babesia, which can be contracted from donor blood products, But it's probably more common that when you have a co-infection, you likely also have Lyme.


    How long IgM stays positive isn't a straight answer. In some chronic infections, I believe it can come and go, depending upon the varying strength of the immune system. It isn't something that is only positive for one period of time and then never becomes positive again. In Lyme, it seems more a measure of whether the immune system is recognizing it at that moment. Could have something to do with the lyme going into cyst form or biofilms and then re-emerging. So if it's positive now, it seems likely there's an active infection that isn't going to go away until treated, even if the IgM were to go away at the next blood draw. Yes, if this were my son, I'd be treating him for lyme, with combo abx.


    I think there are some pinned threads on the meaning of the western blot. If not, you can google. Each band is measuring an immune response to specific markers.


    Do all LLMDs interpret the results the same way? No. Lyme is a clinical diagnosis supported by lab results. So it would depend on the LLMDs experience and the patient's presentation/history. But I think most ILADS doctors would be inclined to treat given these results and your previous descriptions of your son's issues, particularly if you've been treating Pandas and not getting the complete results you expected.


    As to whether to do another IVIG - depends on your son's response and your financial situation. My son reacted so strongly to IVIG that a second probably would've caused too much inflammation/herxing. It isn't common to use multiple IVIGs to treat Lyme. But it's not unheard of. Dr J has patients who see Dr B for periodic IVIGs and the parents seem to feel it's helpful. But I personally found you can get the same result more gently, a little more slowly, with combo abx and herbal supports and anti-inflammatories.

  20. I happened to see my daughter's LLMD this afternoon and asked him who he'd recommend in the Boston area. He suggested this LLMD http://www.mypathmedical.com/meet-dr-lantsman/

    You can also look into this practice - http://www.lymeandpanstreatmentcenter.com/about-us


    Yes, I absolutely think your post-IVIG flare is because you have untreated/chronic Lyme. The why behind this is what I explained in my earlier post.


    There were a number of Pandas kids who weren't getting better with standard Pandas treatments - many found out that Lyme was the reason. The researchers heard this so often that they created the broader category of Pans to cover Lyme, mycoplasma and other infections that can also trigger Pandas symptoms.


    If you have family members who are actively involved in your care, please have them read the ILADS website and the book Cure Unknown that I mentioned above. You may be too sick to be able to absorb all the information, but these are excellent resources to help a caregiver understand what's happening. You may also want to see the movie Under Our Skin, which is on Netflix

  21. An infectious disease doctor will be, at best, a waste of time. At worst, they will charge you to spend 20 minutes telling you why you don't have Lyme, that chronic lyme doesn't exist, despite hundreds of research papers proving that it does indeed persist despite antibiotics.


    What you need to understand is that the Lyme bacteria can take 3 different forms - it can be in the form of a spirochete - a corkscrew shaped bacteria that moves itself thru the blood using a flagella (a tail). Extracellular antibiotics like augmentin, cephalosporins, doxycycline - can kill this form. Lyme can also get inside your cells and hide from your immune system. Intra-cellular antibiotics like azithromycin can kill it when it's in this form. It can also curl itself up to make a hard exterior - a cyst form - that is nearly impossible for these antibiotics to attack. Then, once the antibiotic is stopped, it uncurls itself and begins to replicate again. Drugs like flagyl and tindamax can be somewhat effective against the cyst form. Finally, Lyme loves to colonize in biofilms - slimy, plaque-like communities of bacterias and viruses that cloak themselves from the immune system, exchange dna amongst themselves and re-emerge from the film periodically to travel thru the blood stream into a new part of the body to begin re-colonization. Biofilms are tough to attack and produce painful systems on a cyclical basis when the "pioneer" bacteria break from the film to forge new colonies.


    So most LLMDs will treat you with multiple antibiotics at the same time - one extracellular, one intracellular, and then a few months into treatment, a cyst-buster. They may also use supplements that weaken biofilms. Using one antibiotic at a time, even via IV - isn't effective for chronic lyme.


    The fact that you have a positive Lyme test using a standard lab tells me beyond any doubt that you aren't going to feel better until you work with an LLMD who will use this multi-pronged approach following ILADS protocols, either with pharmaceutical antibiotics, herbal antibiotics or both. An infectious disease doctor is going to follow IDSA protocols, which is using one antibiotic for 3-4 weeks and then when you aren't better, telling you that you have post-lyme syndrome and that you just have to learn to live with it.


    There's a good LLMD in the northern Boston area, there's a Pandas/Lyme treatment center in the southern Boston area and a great LLMD in the Hartford area. If you're willing to pursue this route, let me know and I'll get you their contact info. They don't accept insurance but do you give you a claim form so you can submit to insurance to be reimbursed (you pay out of pocket at the time of visit and then get reimbursed from insurance once you've hit your deductible).


    I highly recommend you spend a little time on ILADS website www.ilads.org and read the book Cure Unknown by Pamela Weintraub. It will explain a lot and is an easy, fascinating read.


    I agree with Rachel - you do not want to pursue Pex. My son had Pex prior to his Lyme being diagnosed and it set him backward. Not horribly, but it did nothing to help him and was a very expensive, failed treatment. We didn't know any better at the time. But my son was eventually brought back to 100% by working with an LLMD.

  22. In case you aren't familiar with Igenex, they are the preferred lab for Lyme testing because other labs don't screen for certain markers (known as bands) that are very specific for Lyme. Igenex does screen for these bands and catches many positives that other labs miss. You can browse the threads pinned under the "Helpful Lyme Discussions" heading at the top of the Pandas forum page for a full explanation of testing and what the bands mean.


    Bottom line - using Quest or Labcorp to test for Lyme is unreliable because they don't look for some important markers. You need to test through Igenex.

  23. The half life of IVIG antibodies is roughly 3 weeks. By now, most would be out of your system. Two things come to mind - First, has your doctor reviewed your symptoms to make sure this isn't some sort of meningitis or encephalitic response?


    Second, if the IVIG made your immune system stronger and you have a chronic infection (e.g. Lyme) then you could be experiencing a continued response to your body finally being able to attack the infection. When Lyme bacteria are killed, they release toxins as a last-ditch attempt at chemical warfare. This is known as a die-off, or herxheimer reaction (called a herx in the lyme community). When my son had IVIG, he experienced a 10-week long herx that was just horrible in so many ways. Because his body didn't "follow the script" and respond the way it should have for Pandas, we tested for Lyme through Igenex labs (waited 10 weeks to make sure all donor antibodies were out of the picture). His Lyme test was negative prior to IVIG but positive afterward, because the IVIG strengthened his immune system to a point where it could finally start fighting the Lyme and producing its own antibodies - which resulted in the test finally turning positive for Lyme.

  24. Moosiebell - we also see Dr M and have done lyme for DS, mold treatment for DD (mold was in school). Because of the mold illness, DD is now prone to chronic sinus infections. Has Dr M swabbed your DS for MARCONS? Have you done the Shoemaker blood tests lately? Have you ever done anti-fungals like itraconozole? If you get positive results from a sinus swab, Dr M can get you a nebulized concoction to help with both the bacterial and fungal infections.


    As I said in my earlier post, the addition of the SSRI for us hasn't been a bad thing, it just hasn't been a huge help either. If you don't want to go back to antibiotics, you can also read up on the herbs Stephen Buhner recommends in his books. I really like Alchornea http://tipsdiscover.com/health/systemic-herbal-antibiotics-alchornea/ and a combo blend of cryptoleptis, sida acuta and alchronea, sold as C.S.A. from www.woodlandsessence.com I put the tinctures into empty gel caps to make it easier to take - the tinctures aren't particularly pleasant tasting. Chineses skullcap has also been helpful. The herbs don't seem to come with the same yeast risks as antibiotics do. Some also have antifungal properties.

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