queenmother

Thank you so much! Well, as I mentioned waiting for the other shoe to drop....today that glass slipper is dangling from her big toe. Hard to tell if it is just normal teen angst and her being a little s**t, or herx, or PMS, or myco, or lyme, or mental...or all of the above. (And for those of you who did not fill in the letters *n*o, shame on you! :-)) In my attempt to be brief, I did not give all of our history. Rowing mom, we have been working on the methylation issues with the Yasko protocol for the past 2 years or so. We have contributing genetics (BHMT1+- and MTHFR+-, in particular) and have been doing pretty good on the program until Dd had flu in December. We have battled (and beaten) h. pylori, ringworm, hookworm, eczema, psoriasis, lichens plantaris, h. blastocystis, mycoplasma pneumonia, hives, benign cyst removal, staph infection....all in the past 3 years. We keep knocking things out one at a time. I was totally ignorant of Bartonella when the horrible purple striations came and thought it was just an extreme reaction to a growth spurt. She is very fair-skinned and I had her applying cocoa butter to the striations. I had no idea that Bartonella even existed. Interesting to note that when acne flared, her dermatologist put her on doxy and the purple striations went away. We still did not make a Bartonella connection. We had our best stretch of 'good' on the doxy for her acne. Then we had another bad spell of everything. Our local alternative PA ordered ELISA and she showed intolerant of gluten but not celiac. After a year of total gluten-free, her tests came back normal and she was allowed to resume wheat. (In all fairness, we would have continued GF but were going to Italy and were hoping she could enjoy the pastries and pasta..which she did after being off everything for a year) At the same time, we were building up the Yasko protocol and she was doing really well. As we fought each battle, we saw improvements. Right up until the flu in December...then she tanked....big time. We fianlly had no choice but to hospitalize. After 2 weeks in a major university hospital, my daughter was only slightly (very slightly) improved due to a low-dose SSRI and I was made to feel like a lunatic Munchaussen mom with no parenting skills. I kept insisting that there was a pattern to her behaviour but, not being a doctor and having never played one on TV, I couldn't fit the pieces together. After being released, I took her to a local alternative PA who actually listened and respected my observations as a mother. We began testing and our PA is convinced it is PANS. I am beyond convinced that it is PANS. so, yes, we are working the methylation and struggling to fit the pieces of the puzzle together. I am worried about keeping her on doxy long-term because of the dental discoloration aspect (just got the braces off a year ago) and summer is upon us and her entire social life revolves around the beach.And as much as we love her, our PA is not as experienced as some of the pros so I need someone with more experience. Our PA is great to have and would work well with a specialist. I have finally convinced duh hubby that this is not some Hail Mary desperation diagnosis and that he needs to get on board. I live in coastal NC and have been informed by ILAD that there are no good LLD near me. All of this started 3-4 years ago when we moved here and I am totally missing Los Angeles right now. Can someone tell me the closest PANS specialist? Or the best? I am leaning toward Dr. Boubollis. He is not the closest to us but I like what I read. Right now, availability will trump all. We just need to get her through the last week of May when school ends and I will take her anywhere for help. Thanks for your input and I appreciate all doctor and treatment advice you can give. QueenMother

Mar, I am certainly no expert at any of this but I do know that the COMT gene is involved in dopamine and dopamine is relevant to tics and behavior. Depending on whether or not a person has a COMT++ or a COMT-- or a COMT+- determines how a person reacts to methyl donors, such as chocolate, caffeine, some additives, etc. If a person is COMT++, this means that the enzyme is very sluggish and cannot handle the methyl donors. This causes a kid to get really amped up, loud, and impulsive.The excess dopamine then feeds back and inhibits itself causing really gnarly mood swings. (COMT-- can handle a heavy load of methy donors and they are usually more laid back.) I relate all this because some of your son's reactions to food may indeed be genetic and it has helped us greatly knowing my kid's genetics. This syndrome is crazy enough to fight and we need all the arsenal we can get. For instance, my kid has BHMT1 mutation which makes it more difficult for her body to rid itself of viruses and bacteria. So, even if we figure out how to kill off the offending trigger, we have to bypass that weak gene or she could get something else that triggers her...assuming we could get rid of the original offenders. I know getting the genetics done is expensive (hey, there goes the Italian Riviera again this year), but I am a big believer in having that roadmap to help direct us on this journey to save our kids. Meanwhile, just love him up..this is harder for them than it is for us and they get sneakier as they get older. Hang in there! QueenMother

I am very new at all of this so please bear with me. After years of trying to figure out what was going on with my daughter, she recently tested positive for mycoplasm, bartonella, HHV6, and some bands of lyme(though inconclusive). Mycoplasm showed current activation and past (IgG and IgM). Our current struggles started in December with a severe bout of Influenza B that dragged on and on resulting in severe depression, rage, mild ocd, intrusive thoughts, and ultimately she stopped eating. Completely. Hospital stay was pretty useless and nobody would even remotely consider PANS/PANDAS (I begged). Local doc listened and ordered panels. Bingo...looks like mycoplasma is a BIG trigger for her. We started her on azithromycin but my daughter got so much worse on azithromycin that we had to stop after a couple of days (She tested resistant to amoxicillin). 12 days ago, she started doxycycline (100mg am and 100mg pm) to see if she tolerated it better. The first 4 days were an absolute nightmare with all the worst behaviors surfacing. Just when I was about to stop the doxycycline, everything changed.....my daughter came back. More like the new and improved version. She is the best we have seen her in, well, I can't even remember seeing her like this. Even she says that she feels different and she feels happy. I am trying to remain positive and enjoy this turnaround but I find myself waiting for the other shoe to drop. Is it possible that the doxycycline has hit the mycoplasma? I know it's not the first choice for treatment, but there is no other explanation that we know of and it seems to be helping. I still want to get her into a PANS specialist. This will take a long time and I don't know how long she should stay on the doxycycline. Has anyone gone this route before? Thank you all so much! QueenMother

Thank you so much! We have started with doxycycline because she seems to tolerate it much better right now. I'm sure it's not the cure-all, by any means, but we are hopeful to kill off some of it so that maybe she can tolerate a different round in the future. I keep reading the names of the doctors who seem to be the experts and I have 'sort of' convinced the King (too many royal pain jokes running thru my head) that this option is much better than what we are dealing with now....so I'm making the appointment. Is the dr in Maryland better for myco/lyme/bartonella/HHV6 or Dr. B in Connecticutt? Or is there someone better than those two? Why is it so hard to find doctors who believe in and treat this bloody PANS? The doctors I'm dealing with act like I'm suggesting that the Princess is possessed by spirits and I need them to do an exorcism. It is so incredibly frustrating. Thank God for the one alternative doc who is trying to help us or I would not even have access to any medicine at all. Have any of you used doxy and what was your experience? Heartfelt gratitude, QueenMother

I don't know if it is appropriate for me to jump in but, in my quest for information to help my daughter, your posts are ringing all my bells. This is all sounding very familiar as she has tested positive for mycoplasm (IGg and IGm), some bands of Lyme. Two weeks in major university hospital yielded no help so I have been on this mission since bringing her home. Our local alternative doc ordered several panels and we are beginning to get some answers (positive for mycoplasma, HHV6, and Lyme...Bartonella is also probable;she did not test positive but she had the purple striations). My daughter is resistant to amoxicillin and every time she starts the azithromycin, she sinks into a dark depression and the rages get worse. The enlarged pupils and eating restrictions get worse, as well. I don't think this is a herx reaction because these are all the same things that led us to the hospital to begin with. She has taken azith before and tolerated it just fine so I am perplexed. And yes, I give probiotics. Could the azith be hitting the mycoplasm or lyme and causing a big flare? We are supposed to add it Omnicef but haven't been able to yet because things spiral out of control until I stop everything. Is this to be expected with die-off? I just don't know what to do. I would love to get appointment with a PANS specialist (willing to travel) but am having a hard time convincing my husband that PANS is real. The "official" docs at the university hospital do not seem to believe in PANS and will not even entertain the idea. But I can tell you unequivocally, as her mother, she fits the criteria perfectly. This journey to help my kid has been a nightmare. I am curious to know what has worked best for you, even though I know every case is different. Did you all experience a really bad reaction in the beginning? Thanks for any help. QueenMother

Oh, LLM! (batting my eyes here and smiling sweetly. can't believe there isn't a coy, flirty emoticon) Soulmates, indeed!!!! Yes, I am very into the methylation process. It is very difficult to stay on the program and treat with antibiotics and herbal supps on top of it. We struggle with that but, happily, we are seeing major improvements. We have had almost 1 1/2 years of GREAT and then the flu hit here hard. The princess tanked. We are slowly coming back up now and my goal is to get her to a point that her immune system can handle things without her tanking every time. She is an amazing young lady until she flares....and this is the first bad flare she's had in a long time. After the flu, she stopped eating. Of course, that affected everything across the board. Then the cutting started which horrified me. It's been a rough few months but we seem to be getting back on track. Antibiotics helped break the cycle and Cumanda has been helping us a lot. We started it while waiting for the last batch of tests and I have been very impressed with it. Going low and slow with it but, as we parents can tell, I am seeing subtle differences that are all positive. Some days I actually see glimpses of my formerly giggly, happy child and I savor them. Oh, and DeDee.....LLM and I would probably drown in our own gene pools! Keep me posted on your progress with the methylation and genetics. QueenMother

Sorry to jump in so late....I am new to the world of PANS but have been searching for answers to my daughter's problems for the past 3 years. Your discussion on dopamine caught my attention because of my constant attempts to keep it balanced. Some background.... approximately 4 years ago, my DD(then 11 yrs. old) changed completely from a giggly, eternally happy bundle of energy to a paranoid, angry, dark, depressed, shadow of her former self. She also began having a series of problems, including but not limited to psoriasis, eczema, mycoplasma pneumonia, ringworm, hookworm, severe acne, cysts (one removed), occasional swollen nodes, hives, rage episodes, cutting, anorexia, h. pyloria, hominis blasticystis, plantaris lichens,OCD, tics....well, you get the picture. And this week, I have gotten tests back that confirm she has/had Bartonella, some type of mycoplasm, HHV6, and some bands of Lyme that show positive even though the overall test is negative. For 4 years, I have not been able to get many answers and have been desperate to find some answers. My best help came after a local PA suggested the Yasko protocol. Through Dr. Y, I had DD genetic panel done and learned that she has a polymorph on the COMT gene, and a single mutation on the MTHFR gene and the BHMT8+ gene. This has helped us tremendously. The COMT gene relates to the dopamine. COMT++ means that she has a sluggish enzyme to handle her dopamine. When the dopamine puddles due to the sluggish enzyme, it inhibits itself. This is what causes mood swings. It seems it is always either too high or too low and our goal is to keep the level balanced. It's quite tricky. The BHMT8 gene seems to consistently relate to viral/bacterial load. She also showed in testing that her glutathion levels were non-existent. I suspect that the genetics is why all these kids present differently with their various symptoms and behaviors. The level of dopamine overall would also affect how much dopamine is involved in different areas of the brain. And other genes play a role in how the brain handles the dopamine, as well. The supplements on the protocol have helped tremendously but we are still trying to battle one infection at a time. Dopamine will not be balanced until we eradicate more of them. Dopamine levels are affected by viral/bacterial load and metals, along with diet, stress, hormones, and a wide range of other factors. Our hope is that we can cleanse the body of virus, bacteria, and metal (virus holds onto metals), so that we can then balance further with diet, supplements, etc. We also have to focus on her gut and the glutathion issues. Proper methylation is critical in keeping the load down once we eradicate the existing offenders. As long as I have breath, I have hope. Anyway, I highly recommend the genetic testing to help you fully understand dopamine as each individual has a unique presentation based on their genetics, particularly the COMT gene and the VDR genes. I am certainly no expert and speak only of our journey. I am, however, a HUGE advocate of having a roadmap to help get my child to good health. I think that the future of medicine is all about epigenetics, being able to bypass or turn a gene on or off. I am loving this forum and have learned a lot from all of you brave warriors. QueenMother

You are wise to be concerned. Sounds like something is definitely not right. I don't know any doctors in Alabama but I can make a suggestion for NC. Dr. Iliana Perrin is a pediatrician at UNC Children's hospital in Chapel Hill, NC. I am told that she actually worked with Dr. Swedo on the PANDAS study. We are new to all of this and have not seen her yet but at least it's a start for you and worth checking out. For what it's worth, my daughter tested resistant to amoxicillin so it is useless against strep for her. I have read that this is the case for many. Trust your gut and, hopefully, someone will know a doctor near you in Alabama so that you can get your precious boys treated sooner than later. Stay strong.