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I'm sorry, I don't mean to sound defensive here, but: I spent 2 solid years working with this child on strict special diets, all natural treatments, NO antibiotics. Still could not 'fix' her gut. Half way through those 2 years, worked with a famous DAN! as well, in an effort to heal this child's digestive system. My belief now leans toward I will never fix her gut, really, unless the heavy metals and Bartonella can somehow be eradicated. Or, maybe, this will just be the cards we are dealt. But you have no idea how hard I tried, for years, way before she was ever put on antibiotics (and she was never on them as an infant or toddler.) I'm sorry- I am sure you mean well- But we have some grave, serious underlying issues.

The out pour of replies, suggestions, has touched me a lot, and I've taken it all in. Thank you so much. This little girl, 7 today, is so complex. We have done parasite treatments. Not enough, probably. I'm at a crossroads. Waiting to see the newest OAT results, try to correct the abnormalities, and then I might switch her to a ND for Beyond Balance herbal gentle Lyme protocol, because the yeast and gut issues keep coming back- despite years of special diets and treatments. She has been on antibiotics for 16 months straight-and I would like to believe it's reduced some load of her horrific infections. She was born with a compromised immuned system, and was fully vaccinated with 36 shots before the age of 5. Heavy metals are a very strong and destructive issue for her- I don't think I will ever fix the gut until these are detoxed. Gaps diet or not. I was on this very path with her, had just started chelation, when PANDAS hit, and of course quit, caught in the vortex. So, I think I may go with gentle Lyme herbs, and weekend chelation transdermally- (because again with her gut she could never handle oral chelation-) and suppositories are out. And with deeply embedded mercury, et al, I am thinking (and my old DAN agreed) transdermal DMPS or DMSA. Thanks for letting me share--and for sharing with me.

I tell you, it is confusing for me, too! Double A1298c - found a homeopathic capsule supplement of BH4- but for this particular deal, it says it boosts the neurutransmitters- Well, had a recent neurotransmitter test, dd is off the chart high dopamine, AND has very high seratonin. What the heck to do with that? My former LLMD was somewhat in shock with the levels- I was asking for low dose clonidine, because things at home are unmangable, to the point that after 3 years of bio -med I'm asking for a pharmacutical, I have tried everything natural- 5-HTP, Kava, on and on, with no results or worse, and clonidine is a mild, no black box warning drug, this Dr. said okay, give you script to try, but the only other thing I can think of that may help you is Risperadol! Which is heavy duty, big fat side affect brain effecting drug. Also did an amino acid profile with this Dr. said methionine is very low- taurine was okay, because I used to supplement that for her. So see, I have NO idea what to supp. Also, double A1298c does not produce high homocysteine levels. All I really know with our specific mutation is to check for high ammonia. Dd's transmitters are all high. This Dr. laid out the MTHFR chart to me, the circles that make your head spin- but.... I am weary of buying more expensive supps on my own, trying for hit or miss, so often a miss. I think very few Dr.'s really know the great, exact details of MTHFR, especially without the C677T. Or maybe it's just me. By the way, the clonidine is also a no go with her. Sorry to be Debbie Downer, at a low spot.

Hello- My dd also has double A1298C. When our then DAN got the results, he actually didn't seem to think it was a big deal, and he knew a lot about MTHFR- but perhaps before hand because I had told him no way am I giving her shots, and her blood levels of B12 were on the high side, I had been supping with the B's, anyway. Of course, showing high blood levels of B12 does not mean the body is converting it properly. Okay, having said all that- what I have been able to learn about A1298C (and this will be a cloudy and unprofessional explanation with no links) We have to watch out for ammonia. Yucca is an herb that clears ammonia, many bio-meds use it for this purpose, it should not be used more than 2 weeks at a time. I went on Yasko's supplement site, searched- 'BH4' is suppose to help, but this is not a supp you can buy, although she recommends a liver supplement specifically for A1298C. The other thing she offers are her RNA formula's- Ingredients seem to be a secret, a scientific base I don't get, and expensive- 1 bottle (liquid) is $80. Yep, I bought the bottle of RNA for A1298C, gave to dd every morning, slipped myself some (because I have one of these, who knows maybe two also, never been tested) and honestly could tell nothing from it, personally won't buy again, have pondered the specific liver supp, which is good herbs. So, I give her oral B-12 drops most days, supp some B complex. Sure I'm not much help here, but if you learn anything, will you let me know? The ammonia is a big piece. I am hoping the new OAT test I am waiting on measures ammonia levels. If it's high, I'll get some Yucca.

Again, thank you so much everyone, it means a lot. Really. No, this was happening while antibiotics- I was using binders, detox. I did stop giving antifungals this last month, she was on 2 high dose antibx, and my thinking was not to tax the liver- Mistake- yeast is always an issue with this child. And I don't feed her cookies all day long. I treat yeast (3 years, before antibx) and it always comes back. I give massive, quality probiotics. Some say you will always have yeast if there are heavy metals present- she has those present. Maybe I need to work on that for a bit, treat the Lyme gently with herbs. Yes, she and I both have Bartonella (mine was positive Igenex) we both have been on antibiotics for that, and herbal tinctures. Her antibx this last 5 weeks were for Lyme only. To me, this is not because I pulled her off antibiotics- it has been escalating for weeks- so I pulled her off because I wondered/thought I'd blown her gut out- we had diarrhea, I was thinking clostrida and yeast. I know yeast is BAD right now treating with ketoconazole, this is a good one for her, and probiotics, that is it. Waiting on OAT. I am going to try and get Michael's recommendation for inflammation supplement. Whew. Lost again. At a pretty low point.

Thank you very much. I am in tears again, and I'm not a crier. Me collapsing on the floor wailing with grief and fear on Sunday after the attacking left my entire family in shock. This was before our 'vacation.' Oh Dawn. I am thinking of you---------and shedding tears for both of us. Please hang in there. Wish I could do something. I understand what was meant about PANDAS treatment- treating the autoimmune- the brain being attacked. This of course, I know---we have PANS, but we did a 5 day steroid once, shut down her immune system with infections underneath, and it was terrible- stopped eating, psychotic. We still have known infections, I can't try it again. We had 2 HD IVIG's- the first was awful- the 2nd was wonderful from day 1, but then wore off completely at 4-6 weeks when donor antibodies left her system. I paid $8,000 for both. I am unable to spend this money again, when it could be the 'wrong' one again, or the right one only lasting 4-6 weeks. Thank you. I am lost. Again. And just feeling so much grief.

Because I don't know what to do. My dd, almost 7, is violent. This is not new, but has escalated to emergency status. We are on spring break. Her brain snaps. She attacks. Screams threats. If anyone outside my home heard her--- We tried our first ever vacation, 2 days, 1 night hotel. My DH and I had reality slammed down on us. She had violent episodes, a complete panic attack in public. Although I have always tried to be strong, you know me, preaching detox all the time on here, right? I have been having breakdowns, sobbing, on the floor, I am so frightened for her. I swear to God, I seriously think she may just be bipolar. My 5 yr. old and 14 year old have been very affected. All in the same hotel room, it became so clear what their lives are like with this, too. It is me and and most of the time my sweet 5 yr. old that are abused. She has attacked my husband. I am 105 pounds and weak. I can't lift her anymore. It hurts now when I am kicked, pinched. I cannot control it. Her brain is gone. If I remove her, she starts to self injure. I called our Ped. office (new to us this year) crying- my child is violent- we have a psychriatic evaluation next week, soonest we could get in. At the very least, I need this documented- this is the child that is perfect every single day for 6 hours in a row at school- good grades, never once! had a behavior problem there. The SECOND we pick her up, she starts in. The 7 minute drive home is a nightmare, she refuses to get out of the car, on and on. I have taken her off antibiotics about 5 days ago, and am only treating yeast, probiotics. Yeast I know is happening. She has fought yeast for years, before antibx. Sent in an OAT to see if there is clostridia, back in 10 days. I have clonidine, which does nothing, except maybe she will fall asleep on the couch, after terrorizing. I thought about taking her to an emergency room today. I am not well myself, especially now after all this emotion. I feel paralyzed, and my DH and I are so grief stricken. I have tried to treat the medical, with some of the best Dr.'s, for 3 years. Now it feels like mental illness, beyond the medical implications. She does not have autism. I am afraid they might keep her at an ER. This would BREAK this child's spirit. She is fragile, so dependent on me. Yes, I am giving ibuprofen. Perhaps I've also wreaked her gut with that, too. Can't give a steroid - she flipped last time I tried, with her underlying infections. I don't know what to do.

We have been using Trienza chewables by Houston Enzymes for quite awhile. It is a broad spectrum enzyme formula, covering all the bases: They have the DPP IV to help with the gluten and casein, also the 'no phenol' component to help with sulfites and phenols, and enzymes to help with carb breakdown, etc. They are a tasty chewable, less caps to swallow.

My dd also had a very negative reaction to NAC- tried it a year or two ago. I'm sure you know this about the MTHFR- even though the body is testing high in B-12 and folic, it doesn't mean it is utilizing it correctly. LOL about the kids choice, I am hoping the repeat tomorrow buys me a few hours.

I loved your post :-) In case I've never told you, I am a bit in awe of you- Going through Lyme treatment yourself, working full time, while supporting two girls going through Lyme treatment. You are a strong lady, much respect, please keep posting your journey, helps the folks like me. I am collecting for my dd's OAT this very weekend- I need to see what is going on in her gut- suspect we might have some issues that we will need to correct to try and get back in balance. Yahoo for the happy memories! I am going to try and create a few too this upcoming Spring break week- taking the kids on a 2 day trip to San Francisco (we can drive there) and then my dd is turning 7 and will be having her first 'real' birthday party with school friends. Things I have always been afraid to do in the past, with the unpredictable nature and feeling too stressed to try- we have never even really taken a vacation all together. But I am learning myself as I slowly heal to learn to try and have some fun, and make some happy memories if we can.

Hi Michele, I don't think any of us can really recommend which antibiotic combo's and doses, this is really a Lyme Literate medical doctor's decision, based on your child's infections and whole health picture. I just want to mention that a positive p23 band is very, very indicative of positive Lyme infection - our experience with our first Lyme test, and confirmed with the research I did on that particular Lyme only bacteria band. We went on to further testing, and are now being treated by a LLMD. It's not an easy road. But I truly believe unless we try our very best to eradicate these horrible, seemingly worst on the planet infections, our health and quality of life will only get worse. I don't know much about Myco. P, as this hasn't been an issue for us, but while treating these kinds of infections, it is crucial to help support the body- quality probiotics, detox methods, watch out for yeast overgrowth. We are having a rough patch with my daughter, and while I don't feel great about this, I have been using ibuprofen 2x a day. Hang in there---

I used to phone consult with Scott Smith (works with Dr. Neubrander out of New Jersey.). Scott is on (or was the last time I checked) a pandas advisory committee, and has 2 boys that went through pandas, and now treats it professionally. Our treating pandas Dr. was out here on the west coast. I really, really liked taking with Scott and picking his brain. He helped us out a lot. JMO and experience. ETA: Scott will not be able to prescribe anything for you unless he has a first time visit with your child in person.

My CD57 was 45. I was told if it is <60, this indicates chronic Lyme infection. I have never heard of in the 20's indicating Babesia - interesting. I have tested negative for babs, positive for Lyme and Bartonella. For the life of me, I cannot figure out if I have Babesia - some of the symptoms could apply, but they also apply to other things. My new LLMD does not think I have it- I gather he thinks that because maybe I wouldn't have been walking around for years not knowing I was really sick (just thinking I was heading into Alzheimer's because of my failing memory, or MS maybe one day because things kept dropping out of my hands out of my control.) Anyway, we all know testing comes up with negatives when it really isn't at times, so I am going to ask for 1 more Babesia test- maybe a smear type- I could of course start drugs for it and see what happens, but I'm getting drugged out, and would like to know, if I can, for sure. Never ran CD57 on my dd, almost 7. Sorry so chatty Cathy today. I think your CD57 score being so low does indicate some serious infections, I'm sorry.

Flu like symptoms can be classic die off symptoms for Lyme, making complete sense it happening as you increase the Lyme killing antibiotics. What are you doing for detox? Sounds like you need to help/up your detox protocol, which is an essential part of treatment. Hang in there-

*I am really sorry you've been through all that- I understand. I don't think anybody really gets what it's like to live through this pain and absolute emotional toll except the parents on this board. Wish I could help more- thanks for sharing with me, I am sending PV's----

My favorite online supplement sites, although not the cheapest, but both have a large variety of high quality supplements, with in depth information about each one, and I can get most things from the same place are: Our Kids ASD (Lee Silsby pharmacy) Pure Formulas

I don't know your feelings about Lyme (not good? I don't feel so great about it, either, lol.) If you don't mind sharing, selfishly for me, being CDC positive for Lyme, then going to LLMD, how long did it take to treat? When did you know when you were done? Some supplements for my dd that help in this area, for lack of better words, make her seem more 'smart' and I notice clearer, more detailed thinking and talking, are Phosphatidylserine (expensive, but total keeper for us) and B-12.

Our personal experience, before we knew about Lyme and co-infections being present, we had 2 high dose IVIG's. The first one did nothing (we were in the same nightmare). It was a big herx. I had a PANDAS/DAN Dr. that was our primary and prescribed it, and then I had another PANDAS Dr. on the east coast with whom I was phone consulting, double checking, getting another opinion from- when I called and said we are worse- horrid aggression after our 1st IVIG, he strongly suggested a 3 week course of oral Vancomycin- I was desperate, did it, and she got better (looking back, think it hit Lyme type bacteria) but still thinking strep only, she started to backslide, strep was in her classroom (she did not catch it, and was on Azithromycin) So, I panicked, did 1 more high dose IVIG, and kept her out of school. Well, this 2nd one was GLORIOUS - happy, content, best play with sister I've ever seen... Until the antibodies left her body completely after 4-6 weeks, and we were back to square 1. I couldn't do anymore IVIG's- we were paying cash for them, and it seemed like a crapshoot- maybe I'll get the right antibodies, maybe I won't. I was also very uncomfortable to continue using pooled blood products from thousands of other people. That's when I looked into Lyme, never thinking it would really be that - Lauren K- isn't IVIG being studied for pandas/autoimmune placebo/ scientific study for the first time right now through the Yale study? I didn't understand your comment about 'watch out for what you read here on this board, what 1 Dr. may say is not fully backed up by science' IVIG is not, either- many various opinions about it as well. This was our experience. I believe if there are underlying infections still present, steroids and IVIG will not eliminate those, and perhaps cause them to flair more. Having said that, there are some Lyme folks that are getting IVIG and it seems to help some- maybe they are immune deficient, we were not.

Hi- I sometimes use charcoal when dd is having significant die off- and it really does help at times. I have a bottle of MMS PRO Activated charcoal, but you can get it anywhere, health food stores, whole foods, Internet. My dd is 45 pounds- I only give 1 capsule at a time, and not every day- it can be constipating, and turn stools dark- make sure to keep bowels moving. Must be taken a solid 2 hours away from any other supplement or medication (before and after) or it will just absorb it. It also helps me when I'm questioning her erratic behavior, and I'm wondering: Is this die off? Give the charcoal and see improvement/calming down, then yes. It is not a magic pill, but there can be all kinds of nasty stuff in there that needs to be bound up and escorted out.

Just wanted to add I started Bolouke caps (Researched Nutritionals) about 3-4 weeks ago, when my new LLMD put me on a new antibiotic protocol for my Lyme- I take 1 cap 2x a day, about 1/2 hour before my antibiotics- I am experiencing a rather consistent, but manageable herx- I feel the Bolouke may be adding a deeper penetration - I hope it is getting some biofilms. I am taking daily lipo glutathione and other detox aids, hoping if the biofilms also have some heavy metals in them (although I don't test real high for that) they will get escorted out. You can buy Research Nutritionals supps online without Dr. ordering them, and although they are expensive, I do really like this product line, and am adding more of their (Dr. B's line) supps to my protocol to help with my chronic fatigue. I do not have my dd on Bolouke, which also helps thin the blood a little, and breaks down fibroids, but she bruises easily, so for her, I add some vitamin K drops, and her bruising goes away and is less when I am consistent with the vitamin K drops.

Yes, hard to believe, isn't it?

*I think I know what you are asking here, although many more can explain it so much better than I, and maybe this is all my opinion. To both of our LLMD's my dd and I have seen (we are back to back appointments) I have said: 'You've heard of PANDAS, right?'. (they nod yes) 'Well, the name has actually been changed to PANS, because it is not just a strep infection that causes these certain sets of neuro symptoms: OCD, vocal ticcing, etc. but also very often Myco P., Bartonella, Lyme... (and then I explain how my child presents, about vocal tics, OCD, lack of impulse control, and by the way, only at home!) I absolutely believe, and live with the fact, that adults and young children can very differently convey their Lyme and co-infections.

Not to scare you off, but we had a HORRIBLE reaction to trying to supplement glutamine. So bad, I threw the bottle out, never to try again. I do not understand how the glutamine amino acid to help with stomach lining relates to our kids doing better with glutamate blockers: Glutamate blocking drugs have been discussed on here before- but I can't figure it out. This was our experience. Too bad they don't sell trial sizes.

If you want him to stay on the antibiotics, call your pharmacy and tell them that- they will contact your Doctors office to get the okay.