sptcmom

For most people it is outpatient, it sounds like if there are some unexpected issues a stay in the hospital might be required. In most cases, it is a couple/few days off work and then back to normal routine (or hopefully a better routine). I am expecting to return to work on Monday. Thank you everybody! I'll give a report as soon as I'm able. GOODLUCK Michael!yes, do keep us posted. The current president of the American Academy of Cranio-Facial Pain is a local guy and a friend. He performs this procedure. He trained in Italy and is friends with Klinghardt too. He has seen great results with this procedure when combined with neural therapy for people with unexplained and "uncurable" cranio facial pain syndromes. Thinking of you, saying a prayer and sending positive thoughts your way.

Rifampin is, not Zith. Zith is a powerful macrolide. Rifampin helps with tuberculosis and goes deep. Lack of adequate hydration of the connective tissues will also affect abx effectiveness. The body produces its natural Melatonin at sundown. Any supplements of Melatonin should be given at sundown to augment the natural melatonin. Practically its usually 2 hours BEFORE bedtime. Melatonin is sleep Regulating NOT sleep inducing. Many parents make that mistake and give it at bedtime. Over time with usuage you are actually messing up the biological sleep rhythmns of the child if given incorrectly. Calms forte for kids works ofr some kids and Calmes Forte regular works for some kids not responding to the kids version. I've tried both with DS and my patients and the child stays asleep if it works. Also Good point to remember is if any abx is deep penetrating it can dislodge metals from their storage sites in the body. BBB crossing abx usually does that. When heavy metals are mobilized that can cause a huge sleep disturbance and painful too as they get redeposited at other sites. Adding an appropriate soaker agent like Chlorella is important and that will help. Actually Cilantro tincture 5 drops in warm water 1 hour before meals followed 30 mins later by Chlorella pyrenoidosa is very beneficial in moving the metals along for soak up by Chlorella. I didn't know this about the melatonin. We have been giving it to him about 30 min. before bedtime for about 1 year now and it has worked great. The sleep problems started before treatment but now its worse. He is on 450mg rifampin and 250 Azithro. Are these deep penetrating? ANdrea

My dd's diet consists of an elemental formula (think infant formula but without ANY food proteins) given through a feeding tube in her stomach. She currently is allowed to eat potato and is trailing brown rice. All other foods are not allowed. SAMe-I looked this up once before and it contained something that she had an IgE allergy to. She is currently on Omnicef (lyme) and Clindamycin (G tube infection). She has been on various others during the last two years. This is the first time anyone has ever checked her liver function! Saw on LLMD on Thursday and he is retesting liver function. Did say he would call GI if necessary. I received an email from GI's office on Friday that confirmed he did not want her on Milk Thistle or probiotics. I guess he doesn't care about yeast infection either. I'm thinking of starting acidophilus from Kirkmans regardless. Problem is if it screws up her next Endoscope in November he will assume it is because of the brown rice and she will lose the food. Okay-just double checked all of her environmental allergies and she was positive for ragweed so she may not be able to take milk thistle anyway. I believe these are in the same family??? I do have a couple suggestions Core dandelion blend from Energetix is homeopathic liquid and helps with liver detox. You should be able to add this to her feeding routine. I would double check the ragweed connection too since dandelion is a weed. Apo Hepat drops from Bioresource are liver detox and drainage. Any further questions are welcome. I can help you come up with a solution. You can pm me if you like. White/yellow potatoes are inflammatory. If possible switch to red or purple potatoes. Sweet potatoes are more nutritious if you're allowed to switch to a close cousin of the potato.

The body produces its natural Melatonin at sundown. Any supplements of Melatonin should be given at sundown to augment the natural melatonin. Practically its usually 2 hours BEFORE bedtime. Melatonin is sleep Regulating NOT sleep inducing. Many parents make that mistake and give it at bedtime. Over time with usuage you are actually messing up the biological sleep rhythmns of the child if given incorrectly. Calms forte for kids works ofr some kids and Calmes Forte regular works for some kids not responding to the kids version. I've tried both with DS and my patients and the child stays asleep if it works. Also Good point to remember is if any abx is deep penetrating it can dislodge metals from their storage sites in the body. BBB crossing abx usually does that. When heavy metals are mobilized that can cause a huge sleep disturbance and painful too as they get redeposited at other sites. Adding an appropriate soaker agent like Chlorella is important and that will help. Actually Cilantro tincture 5 drops in warm water 1 hour before meals followed 30 mins later by Chlorella pyrenoidosa is very beneficial in moving the metals along for soak up by Chlorella.

The most natural way is through diet. Crustaceous vegetables like brocolli, artichoke, cabbage, cauliflower, brussels's sprouts etc help during Phase I of liver detox and are very helpful. They do need to be eaten raw for max benefit though. I do salad and dip for DS. Another child I see likes it blanched a bit and salted but no dip so I guess it up to each child. Milk thistle is NOT indicated for children taking Mepron, Rifampin and couple other abx.

Bartonella is SEVERELY immune suppressive. Far far more than Borrelia or Babesia. That needs to be addressed aggressively. The fact that you have a clinical and not a biochemical (labs) diagnosis shows that the immune system is very weak. As you treat you will find after a few months the labs may become positive for other infections. For us it took a year of conventional and holistic treatments to unmask underlying lyme and BOTH species of Babesia in DS. I have patients where it takes 3 to 6 months. Each child is different. Babesia is the second most immune suppressive so even though we only have a couple double star bands positive on the western blot now Im expecting that to light up as we treat Babesia Duncani and Babesia Microti in DS. ALWAYS use holistic support for detox, drainage, nutrition and incorporate herbal antimicrobials along with the abx for maximum intracellular delivery of the medicines. The dietary golden rules are high protein, good fats, mineral rich foods (multivitamins not so important),HYDRATION. keep the internal environment alkaline. Matrix electrolyte(sachets are convenient) from Biopure or Rehydation drops from Energetix are what I've seen testing great for almost all children I see for ART. Incorporate holistic support of the Yin organs, the healing organs that is. Always support the brain, liver, spleen and kidneys holistically. For the believers..... there are couple additional things to consider when treating anxiety, OCD etc. This is your internal system in chaos and mayhem due to over activity in the sympathetic nervous system. EMFs are VERY VERY important factor to consider. keeping the exposure to wireless, microwaves, radio signals, ipods, Ipads, Ihones, cordless phones, is very dangerous. Laptop keyboards leech out gases and heavy metals. Use a USB port connected external keyboard and mouse on laptops. try not to sleep on beds that contain metal springs etc- just read up on EMFs, Earthing and try to live a low tech life. Most of us can only incorporate so much. try to find a happy medium. Do ALL the precautions at a low key cost effective level and maintain it for success. Let go of stresses, help your children understand the bigger picture and let go of minor hiccups in life. It will not matter how long you take psych meds or antibiotics- those alone will never cure these multiple chronic infections that have made a home inside our and our kid's bodies.IVIG, steroids, PEX- all band aids. Excellent ones but still non curative. Just sharing my experience. Even the most conventional, absolutely brilliant, and saintly, world famous #1 LLMD is currently recommending herbal supplements, talking about energetic testing and the role of psychological wellness. We share several patients in common and its amazing how this physician who has helped thousands of children is able to grasp and understand the importance of Holistic support. We have both seen phenomenal results with very minimal herxing in children with our combined approach. Again, just sharing what I've learned.

Thanks a million you guys for all your kind words and advice.Your support is invaluable to me. We have been out of power for four days and just getting back on line. Hurricane Irene did quite a number on my neck of the woods in NJ. I did manage to manage the horrible herx with mino and yes I know, it goes deep and helps a lot but its also the first time for DS so its doing its job with a tremendous amount of herxing. Infact just a couple hours ago I finally came up with a correct lipid, high protein, minerals and electrolyte intake protocol for his size and age. Will start tonight and hope to reduce this herx soon I pray....

Thanks Melinda for the info and your kind words.One of our "big shot" LLMDs has been COMPLETELY missing a vital piece for the last 8 months. Its a specific tick borne bartonella biochemical piece which can't be picked up with ART. One needs LLMD experience for that and I unfortunately chose the wrong LLMD to stick with. During our travels to the UK inspite of all the precautions DS came in close contact with real bad strain of strep. His Bartonella symptoms ramped up immediately (strep Bartonella is considered to be a recombitant strain as a growing area of research).We received temporary band aids of so called treatment for this flare up from our LLMD at that point.Tons of ups and downs for poor DS with no real answers. ART kept picking up Bartonella and strep but meds were not doing anything and DS's inflammation markers continued to go up. We happened to have an annual follow up appt with our previous big shot LLMD and that physician was immediately able to pick up the missing piece, put us on minocycline and we see wonderful improvements albeit with severe herxing. Dealing with that now. Its still better than having your child unable to walk, even move pelvis down due to excrutiating bone marrow pain and swelling. The cause of which is/should be an in your face answer for a real experienced LLMD that its blown my mind how this was missed. I kept picking up errors on ART but it was shot down with each revisit. Being a recent ART grad I gave in to the supposed 'famous" person's experience and it was a huge mistake. My poor baby. I had him upto 100% when I was following my own instincts but one stupid decision on my part was all it took. Anyways, major lesson learned, DS is healing and I have to work on the herx. Its extremely important more than I can reiterate to choose an LLMD who also really understands PANDAS if your child has that concern. Ultimately it was something Dr T had mentioned during one of our numerous converstions that helped me and our previous LLMD to figure this thing out for DS. Jodie

Hi All Sorry haven't posted much of late. Dad and older brother passed away rather suddenly in a car accident last month in the UK and I've been in a bit of a funk. Just been keeping insane busy at work. But Does anybody have any experience with zithromax plus minocycline or zithromax plus biaxin for their child could you please share dosages and herxing experiences. We're dealing with a sudden severe exposure to strep, bone marrow edema/inflammation in DS and minocycline plus augmentin combo is not working too well. I wanted to try mino and zith mostly but can also do mino and biaxin.All three are testing ok with ART so I have to make a choice. Thanks in advance. Jodie

I have one patient, 12 yr old boy taking lauricidin plus artimisin plus phospholipid exchange plus grapefruit juice blended in a blender. One can add organic honey with no harm. Works for GI issues, parasites etc. He's positive for babesia when I ART'd him. Liposomal artimisin helps with intestinal parasites and babs. Not my first choice but since mom already had it I tested and he came up moderate Yang state for it so we decided to go ahead till mom's stock was up. Also keeping up with microsilica and cilantro as metal binders. Organic young coconut water with pulp, organic coconut oil food grade- can be cooked with, eaten as frozen mini ice pops, pops can be flavored with orange juice, lemon juice etc. Try to keep it organic so it gets utilized well intracellularly. Using coconut oil as a body lotion helps too. Children's bodies respond very well to lotion/transdermal.Not for high temp cooking. Infact all children with Lyme and co should not consume deep fried foods and foods cooked at high temps including grilled with grill marks. Babesia can give strong herxes when treated. Started BAB-1 fro McCamish herbs on a 5 yr old pt. Excellent for kids with babesia as its alcohol free extract and blended in veg glycerin. The 5 year old herxed within hours. He was positive only via my ART and not via blood test so Dr Jones isn't able to use Mepron yet.The child herxed with literally a malaria like syndrome for four days and then eased off with very strong detox baths including wild seaweed bath etc. We're hoping babs will be provoked enough to test positive at his next blood draw so we can use Mepron. Just sharing my experiences. Jodie

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They don't have a cancellation list at Dr Corson's. They will just go down the list and call the next child/person if you cancel. Dr Jones's office is the one that fills cancellations on a first come first served basis in my experience.

They are both distinct disorders that can co exist in one child. The difficulty or look at it the other way, the skill of the child's healthcare provider lies in whether he/she is able to distinguish b/w ASD behaviors and PANDAS motor tics. In my practice I find PANDAS undiagnosed or neglected in kids either because even sudden onset of new "stims" is deemed as changing spectrumy issues, maybe he ate gluten by accident, maybe this, maybe that. Its often neglected because only a very select handful of DAN docs know how to deal with PANDAS in conjunction with ASD or even how to educate the parents to watch for signs and symptoms. Many DANs hesitate to use abx anyways and this complicates matters even more. I have two brothers in my practice, one 5 and one 3. Both diagosed as ASD since age around 2ish.I started seeing them for OT sensort last year and they've made great gains. But started seeing them for ART, ref to Dr T ad Dr Jones and viola, they both have very high camKinase scores (in the PANDAS range) as are their antineuronal antibody titers. Both are aslo positive for lyme. Now 5 months into ART, lyme and PANDAS treatment, the younger brother is talking, turns out he's very smart just like Dr Jones and I thought, is cognitively caught up, is catching up in speech pragmatics and overall doing well. His older brother also has intestinal parasites and its a harder road for him but overall socio emotionally doing very well, 'stims" minimal, is acknowledging his siblings, is speaking, singing actually almost all Disney theme songs which is huge because all he could say before was "I want " and a few labels. Strep lodging itself into deep dark depths of the bodies of our kids on DAN protocols is not a surprise if your DAN doc doesn't do abx like mine didn't. All initial strep was treated naturally and some was diagnosed as a virus due to DS not having high fevers ( turns out his strep pneumo titers were pathetic so no or low immune response obviously)DS9 was diagnosed Aspergers at age 2, PANDAS at age 8, Lyme plus Bartonella at age 8.5. He is now, by God's grace, Aspergers free amongst other improvements.

well, ART practitioners usually don't rely or need expensive blood tests anyways. I agree with Michael on the testing for coinfections. I do recommend doing Bartonella and Babesia though if you don't have access to an ART doc. Based on my learning the recommended change is to go down to 1/10 th the dosage of the allopathic abx or herbal abx that cuased the herx when going thru a severe herx. Donot stop or cease alltogether. One needs to go with gentle and elegant holistic treatment methods for kids after all the abx, IVIG, PEX, steroids etc many have been on. Their guts are destroyed, or atleast harmed even if probio was being done. Need to rehab liver, gall bladder, spleen, and gut with homeopathic remedies. Aggressive is good up a point where we can keep the future long term impact of these abxs on our internal health.

I use bentonite clay powder as a face mask. I make a thick paste with water. I got acne as a side effect of Clindamycin for some reason. Works like a charm. Wholefoods has a detox clay face mask which works well too but bento is just pulling those toxins right out. Seaweed face mask also helps as does turmeric which is antibacterial and antiviral. Kelp powder plus bento powder plus turmeric powder plus water, make a paste, apply on affected areas, let dry and go to sleep- and viola, overnight my face is clear, no redness. I got acne in a few areas not the whole face. Remember to wipe off the mask with a moist babywipe and toss it in the garbage can and NOT to just wash your face in the sink/shower. bento will clog pipes.

VERY well put Michael especially about Dr Klinghardt. After researching LLMDs at all levels like I have never done for anything before in my life, personally, professionally, medically, reading their methodologies etc etc I decided to train with Dr Klinghardt. We did see two other renowned and brilliant in their own right LLMDs and it was tremendously helpful but like many parents here we stalled and plateaued with unexplained blips.All until my training was complete with Dr K himself and I successfully incorporated his teachings into my son's treatment and achieved a miracle of sorts. Addressing the fourth level of healing has been THE single thing that has by far worked the best for DS.It brought together all he other 3 levels and level 5, DS is handling on his own. Subsequent phone conversations with Dr K continue to inspire me and help me further refine my treatment protocols. I never would've believed this was possible last year when we were struggling with "turning back the pages" after hd IVIG. Due to Dr Klinghardt's knowledge, blessings and ongoing stubborn, singleminded research into this, I am now able to help so many other children in my practice. Extremely humbling experience, being in his presence, listening to him speak and stand alone amidst so many nay sayers. He's the man as far as Im concerned. So genuine. The key here is that he is the ONLY LLMD who gets adults and he gets children, gets children with multi neuro issues and can treat each one for itself and synergistically with other neuro illnesses. I found myself to be the only practitioner doing pediatrics during training and he was too. He was excited and happy to share his knowledge, train with me for peds aspect and how to tweak ART for peds issues (ADHD, freq breaks etc), answer all my questions on multi neuro protocols etc. It was wonderful to learn from him. being able to deal with Autism and handle associated PANDAS, Lyme and Co is a fine line, a skill that Dr K is unparalled in and thats what sets him apart. Having seen and still consulting with two world class LLMDs I found each to be brilliant in their own field of Lyme and co with a serious lag in the understanding of associated neuro diagnoses in my child.The standard answer has been once the underlying infections are cleared, the other issues will be easier to handle. I find that hard to digest. Aspergers, myco HHV6 etc all have a seperate yet gestalt effect on my child. The "peeling of onion" for him maybe peeling of three different kinds of onions. No one was able to tell me how or help me with stalling other than mild tweaks of dosages etc. True results were achieved when I started understanding the intracellular biochemistry of these illnesses and how they are so different but so similar at the matrix and cellular levels AND psychologically too. One can't use popular lyme herbs etc for children who also have autism, atleast not in the same way, the same applies to other herbs, homeopathics and supplements. The seven factors of pathology in a child with ASD +PANDAS+ Lyme will be different from a child with only lyme and co. Understanding of the underlying brain and body physiological processes, neurotoxin interaction, neurotransmitter depletion as it applies to each condition, gut dysbiosis, biofilm can all be unique to each neuro condition and each child. treatemt needs to be geared to each child's assessment of the seven factors and synergistically adding healing remedies.For example- Hypothalamus and limbic system needs to be focused on and addressed first in children who have ASD plus etc and not always in children who have only Lyme and co., esp those who manifest with motor tics and less psych issues. DS is doing very well. I have stopped using percentages to gauge his improvement. My son is now whole, mentally and physically. He is in touch with his Energy Field, is making good decisions, is mature, not a single sign of Aspergers, clarity of thought and comfortable in his own skin and is actively involved in his own healing. We are thankful to lyme disease and PANDAS and etc for having shown us the way to a better future for all of us. We have come closer as mother and child. I have matured, healed my own congenital and hereto unknown TBDs, forgiven members of my family, forgiven myself for being a harsh/strict mom,and feel closer to God as well. There was a reason beyond our reach ad understanding why all this happened to/is happening to us. It has been a devastating but maturing, humbling, and educating experience The power of positive thinking has been instrumental in our healing. There is no cure. Just making our peace with the microbes, changing our internal biochemistry to reeducate our immune sytem and have our immune system be in charge. Changing abx, rotating, etc is good for reducing the initial microbial load. The microbes attach to our very DNA, hard to detect and they can morph raidly to escape WBCs, and abx. Abx, IVIG, PEX, steroids etc etc can never win.The real cure is life style change like Michael and many others have achieved, staying ahead of the game and teaching our children good nutrtion and the same. I find that instead of focusing on Kill kill kill the bugs, if I focus on heal, heal heal the body, it works much better for my family and my patients. The body is already innately programmed to seek to heal itself and exist in synergy. Just my opinion and experience.

Do remember to check for pediatric experience in an ART practitioner if its for a child. The reads are unique during peds test, the energy field that children can exhibit is unique, needs peds experience to channel that accurately into muscle testing and I find using moms (sorry dads, I did try)as the extension cord (go between/surrogate) works very well with kids rather than using the standard assistant. Again its a matter of experience and preference. Another aspect is the office set up. Peds practitioners have peds distractions/games available. The patients that I see have multi neuro problems- ASD, Aspergers, PANDAS, Lyme etc and sometimes many in one child. Frequent breaks have to be factored in when doing peds ART and tons of peds experience is needed to drop the flow and pick it back up aganin from where left off. Once again practitioner skill comes in with avoiding misreads of energy bursts in kids. Kids with OCD and ADHD , I find will need triple recheck of major concerns just to confirm the energy read and then one final check for Yin or Yang states to be sure. Usually ART is a one shot deal procedure for adults if they can do it. Older kids may have a more mature session sometimes. Peds practitioners also have a better knack of being able to establish a rapport with a special needs child and to encourage thm at their own level without expecting them to comprehend and/or follow ART directions. Philamom- your insurance not covering Chiro? Usually its chiro or PT/OT but not both. I haven't had any trouble with out of netwrok coverage for my patients so far thank God.Infact as I mentioned before due to unique skill set about 11 families are being reimbursed as if it was an in network deal. Maybe you should approach chiro like that. I know Marc was a PT (I think). Don't know if he still has an active license.Maybe he was an exercise physio, Im not sure. But if its PT then maybe he would be willing to help you go that route with invoices etc. I find PT and OT is essential anyways for Lymies and its been getting covered so far in my clinic since we include therapy evals which insurance companies ask for sometimes and which are needed for school 504 plans and incorporate Holistic into that. Several insurance companies still consider Sensory Integration as Holistic, experimental as we know inspite of Jean Ayers methods being around for several decades. Who knows when ART will be covered!.But Chiro not being covered is a shame.

well, the latest is that Dr K is in his London office currently or was 2 weeks ago when he joined us via Skype for our practitioner conf call. I know she's trying to work it out with him as to organizing testing, both written and practical for ART practitioners who wish call themselves that and be included on the ref data base. So things are underway. They have established a few guidelines already like how many hrs of cont ed will be needed etc. debbie has very little help so she's trying at superspeed to get this up and running. Best part is I believe other than the very few ART greats/instructor types, all other health care practitioners who use ART and wish to use it legally will not be grandfathered in I believe. Everybody has to be up to date and certified at this point. So parents/people have to stay informed about their respective ART practitioners. As Micheal mentions, there is so much new to learn about these chronic infctious diseases and practitioners do need to be current, well read, hopefully also well published and in the know how to be able to help their patients.

Just wanted to post some info on this topic I feel folks need to know. Some may already know. ART is a muscle testing tool developed by Dr Klinghardt. The practitioners range from MDs, acupuncturists, OTs, PTs,DO's Chiros, NDs, DAN, docs, dentists etc. The EAST COAST has some of the finest and most knowledgeable, genuine Klinghardt practitioners who follow the Klinghardt protocols to the T. These guys I know keep themselves current as Dr K's research is always non stop and he updates his methods almost annually with a few good tweaks. BIG questions always is insurance/financial- All licensed practitioners kind enough to risk helping children with controversial diagnoses like PANDAS, chronic lyme, LIA etc are able to give invoices. Some are even in network providers. Infact if any OT, PT, Chiro, Acpunc. is also an ILADS member then insurance, even out of network is a breeze to handle. As these disciplines are typically recognized by insurance carriers as needing 30 or more visits a year anyways as most are one to thrice per week with a Lyme diagnosis. In fact many good insurance plans will consider a highly uniquely qualified OT/PT/Chiro provider as a specialist not available within a 50 mile radius and will reimburse families on an in network basis. I've heard of in network approvals for upto 60 visits a year for parents. Some practitioners take credit cards and using FSA/HSA cards is also a plus to get a tax break for supplements which are otherwise not covered anyways. A lot of savvy parents have discovered this and are able to keep travel local and spend the time saved adding adjunct modalities recommended by Dr Klinghardt AND get it all covered by insurance 60 to 80%. Also to keep in mind - ART practitioners fees are NOwhere nearly as high as some LLMDs. This enables the child to receive weekly or more care which is needed sometimes if a parent lives close enough and is able to follow the REAL Klinghardt methodolgy of biocurrent, neural therapy, MFT, sound therapy, immune entrainment etc which is extremely important as adjunct. Especially more so for parents trying to switch to only herbal abx after longterm high doses of conventional abx. Herbal abx needs to be in conjunction with gut, detox, metal, neuro toxin etc protocols and biofeedback. Several GREAT ART docs who can also prescribe are in NYC, Florida, NY State, Connecticut just I personally know of.The best way is to call Debbie Flyod, Dr K's manager in NJ www.klinghardtacademy.com and ask for a referral based on your area of problem. She is a wonderful lady, personally having dealt with Lyme and Co in her child and family and just a great person overall. She has all the latest info on ART practitioners who are current, up to date in their certifications etc.She is trying to compile a list of all global ART docs who are current with their certifications.Also is organizing certification testing for those who are ancient and out of touch. Dr K doesn't ever say Lyme and Co can be eradicated. I've never read a word in any of his numerous talks, seminars, phone conf, papers etc. If any ART practitioner assures you of eradication just because its not testing positive that day during ART is to be taken with a huge pinch of salt in my personal opinion/experience. Dr K's philosophy is also amply reflected in his clinic in Kirkland, WA where all staff try to make one understand, there is no "cure" just learning how to stay ahead of the game. Just like cold sores and Herpes. Its always there, peeps out and manifests under stress and then goes dormant again.Dr K always talks of traeting not curing lyme in my experience. Several other discipline ART docs work in collaboration with LLMDs for the conventional abx thing. But if one is thinking ART and looking for ART based care, one assumes we want to get our child away from harsh conventional abx and go with natural anyways so the need for regular abx is minimal in people seeking true Klinghardt methods. Just a matter of research, addressing all 5 levels of healing ad learning to live a healthy productive normal life with our immune system and bioenergetic field in charge not any microbes. Eradication is next to impossible as per my research. As Dr. K says- "these microbes have been with us for centuries without being as deadly as now. The Earth has changed, our bodies are more toxic......" These microbes actually ingrain themselves into our DNA itself. ART testing is very reliable and great inter-user reliability and validity. It is however Energetic testing and will depend on/vary with numerous factors. Results can also be different at different times of the day, the body's fatigue level, current internal biochemistry, level of happiness, level of EMFs in docs office, level of positive energy in doc's office, using the tools- signal enhancer and testing devices in appropriate amount of ambient light where needed, where not, keeping the tools and testing vials as far away from patient as possible etc. All these matter. The quality of the ART practitioner, the quality of the office space, the internal attitudes of docs, machines active in the environment, geopathic stress etc all matter. These are some tidbits of info I have gathered from personal experience and attending several NY, NJ, PA Lyme support group meetings. Several parents have been down this road and reaping the benefits of local care for chronic lyme/Pandas, LIA etc. Most parents do caution against or feel very uncomfortable going to practitioners who are not doctors of any discipline. Homeopathy is wonderful but is not Licensed and regulated in USA like it is in Canada and Europe and India. So a four year diploma in homeopathy without any adjunct medical MD or PHD in health sciences would be concern to me too and most parents I've spoken to have cautioned me or said they would feel comfortable obtaining remedies for medical illnesses. oh well.Same goes for general herbalists without actual medical background of some sort. I've found a few homeopaths and herbalists who do these 2 to 4 year diplomas straight after high school and practise right away. That gives me the creeps.Im ok with Doctorates, DMDs, Chiros etc. Also heard that several multidisciplinary ART docs, LLMDs (atleast 2), one DAN doc, two attorney lyme moms, a few LIA moms in hospitality industry, local KPU lab, local compounding pharmacy, are trying to create a fully green oasis shelter for families dealing with multi chronic infections. A place to stay, get treated and heal, meet up with other parents. Since Dr K's manager is in NJ, a few visits cannot be discounted is the hope. Just a one stop shop for families is being considered in NJ. Also a mini camp type scenario where we could send our kids for a day or two at the most and get the best care from personally experienced parents who may volunteer on a rotating basis. Lofty goals but not impossible. Anyways, again just info from my personal and professional experience meant to taken in that spirit. Hopefully a little bit helpful of sorts. Please excuse numerous typos. My carpal tunnel is on today. Jodie

Amy, hormonal disregulation is a well known TBD issue, not PANDAS. PITANDS maybe but not pure PANDAS. I have a mother (39 yrs) and daughter (6 yrs) patients with congenital Lyme and both have Hashimotos.DS-9 and I have both waxed and waned with enlarged thyroids with mild hormonal fluctuation. My pituitary hormones are off. Jodie

DS9 started with eye blinking at 22mos of age very mild and was passed off as stress due to a new preschool and his mild language delay. He was diagnosed with ASD at 24 mos and Aspergers at 33 mos. He's been up and down with picking up some mild tics. 2009- severe leg aches and pains, couldn't walk well, limping, couldn't sit down on floor or go upstairs, muscle atrophy in left leg etc. Did full neuro/ortho work up. Nothing except some bone marrow issue on MRI of pelvis. Picked up another mild motor tic. March 2010 Acute onset of PANDAS. Aug 2010 diagnosed as Bartonella. Oct 2010 diagnosed as Congenital lyme plus bartonella plus Pandas. DS was born looking uncomfortable and irritated. Colic, GI issues, sensory issues. Extremely bright,but OCD, etc. Researched back with my mom and we can trace it back to my maternal grandpa- a WWI merchant marine guy, came back home in 1920 with symptoms I can now relate to Bartonella Quintana or Trench fever. Mom lived in war zone, refugee tents in the woods for a year to escape death. I lost four of my five brothers to "idiopathic" or unknown reason Encephalitis like syndromes. All very bright professionals but with some OCD, quirks etc. I grew up with mild OCD, dirt phobia, mild eye blinking tic, stuttering onset at age 4, rages, anger, relapsing and remitting till age 12 at puberty and then it all seemed to resolve my mom says. I have no childhood memories that I can recall. The first ones I can truly remember are at age 11!!After IV abx for internal strep in my teens, I actually had photographic memory all thru college until 5 to 7 years ago when a near fatal car accident with brain injury reactivated my dormant Lyme and I was back to brain fog incorrectly diagnosed as extented concussion syndrome! LOL!! thats a hysterical laugh. My DS was diagnosed by his idiot allergist as "mystery asthma" after 4 months of chronic cough and put on heavy nebulizer steroids for 1.5 years!! That screwed him so much I can't even imagine. Our PANDAS doc tested for Mycoplasma pneumoniae and it was positive. My poor kid had pneumonia for almost years diagnosed as asthma. We treated with Biaxin for 30 days and viola! no more asthma and no more nebulizer and its been over a year now. Im a clinician and I wasn't Lyme cognizant then. Its a 180 for me now professionally and personally. So, DS is third generation congenital Lyme and Co. I have Lyme, Bartonella and Babesia. I passed on Lyme to DH too. All Aspergers, GI, sleep, seperation anxiety, etc have resolved for DS. We still respond with motor and vocal tics when exposed to strep, contact strep, viruses etc but its becoming less and less. We had him at 100% for a good 45 days AND off abx to give the body a break, before he recently got 5 loose teeth, a viral cold ad Strep a week later! UGH! All those end of year school parties, ll that sugar really did him in. But again reactive for only a few days now not months anymore. Im sure he'll be fine in a couple more days. DH and I are undergoing treatment too. Jodie

Azith works well for us too esp loading on Augmentin during flare ups. Happy for you. Im glad you plan to keep working on it to maintain staus quo. Unfortunately symptoms keep coming back with equal gusto with each exposure/trigger until the autoimmunity issue is resolved.We're currently exploring that option for Ds9 Jodie

I slept next to her last night at my sister's house, but do not think she had the movements that she had the other night. Also, she was positive on bands 41 & 23 on the Lyme testing from Quest and I have orders for testing from Igenex, but after meeting with my pediatrician and an infectious dis. doc at his request, we chose to accept it as a negative. Maybe I need to get that drawn. My daughter is also about to see endocrinology on Tues b/c she has developed hypothyroidism (also an autoimmune issue). I definitely think it's neurological, that's why I'm thinking we should at least have some baseline neuro testing/imaging. Amy, you probably already realize it but as an ILADS member/practitioner, I would consider that test a positive. Bands 23 and 41 are double star Lyme specific bands as per Igenix standards and LLMD/LLCP standards. 41 is controversial being its a flagellin protein reactant but 23 def comes ONLY from the spirochete. We had same issues in DS then 7, did multiple neuro, ortho, CNS, spinal, whole body radionuclear scans, CT scans u name it.NO definitive answers.Left quad started to atrophy, couldnt walk up and down stairs or sit on the floor, muscle spasms, screaming pain. Physical therapy not much help. Finally diagnosed as Bartonella, (PANDAS too)and all symptoms resolved after 4 months of RX. After two years of suffering that is. Exploring chiropractic intervention for rebalancing the pelvic musculature and bone structure at present with great success. I would highly recommend you see a good LLMD/LLCP. Jodie

The liver is the only major organ that can regenerate. It has over 500 documented funstions including both the phases of detox and is the predominant organ in the gut. The gut is also known as the second brain in DAN and holistic circles.Most neurotransmitters and/or their precursors are manufactured in the gut and yes, gut health, esp liver will affect brain function and how messages are transmitted thru out the body, hormonal regulation etc. Lovely article, good info. LLM, long time no hear, hope all is well. Jodie

We need t keep in mind as we all already know that PANDAS is first and foremost an immune system disorder/autoimmune. some points to consider Strep bacteria are just ONE of the triggers. I've seen symptoms triggered by flu mist, viruses, exposure to strep in the kid sitting next to the PANDAS child in school etc. Its very rare to find only strep as the culprit. Most children I see and treat have multiple underlying infections like intestinal parasites, yeast, heavy metal toxicity, ASD, mycoplasma, HHV6, Lyme etc. Multiple neurotoxity in a nutshell. When organisms/strep go intracellular, especially during steroid bursts, they can stay there or migrate out when they feel safer. These ones usually are eventually killed with meds circulatiing and killer T cells. Unfortunately that tiny track/footprint left in the cell is enough for a disregulated immune system to trigger autoantibodies and the symptoms keep going until all remnants of the organisms are cleared which can take one heck of a long time. In my experience, its very important to incorporate antibiotics that cross the BBB and to include nutritional support that keep cells hydrated, energized and osmotically sound to allow ABX to enter the cells. Adequate detox and drainage is crucial to prevent intracellular channels being choked up. Many children are internally so choked up with multiple PANDAs Rx regimens- steroids, abx, PEX, IVIG, Psych meds etc- that higher and higher doses are given with minimal progress. I find ART to be THE best way to determine out of the several supplements available for each organ system which one is suitable and needed for a particular child's individual biochemistry. Once thats figured out then magical things can happen- personal and professional experience. Parents have posted about alternative modalities like TFT for emotional rebalancing and those also help immensely. Along with ABX, its crucially imp to start addressing cofactors like KPU/HPU (common in ASD), metal detox etc and determine the order in which to do so. I've seen disasterous results when well meaning DAN docs atart with killing yeast first and thus releasing all the bound metals into the blood stream and one can see a huge regression in the child as part of the inevitable herx. If all of the above steps have been followed and the child is stable, it is fine to stop the ABX and give the liver and kidneys a break. Concurrently, therapy to turn off the autoimmune switch is highly recommended. This is done homeopathically with German biological remedies in my experience.Reeducating the immune system with blueprints of what healthy organs look like is immensely helpful in reducing flare up severity. This reduces the flare ups seen as a sliding scale until they are minimal/none after which you continue nutritional support for additional 6 months and treat illnesses as they come. For those who are new to me- DS diagnosed with ASD at 22 mos, Aspergers at 33 months, PANDAS at 8 yrs,IVIGwith Dr K and ABX with Dr T, Bartonella at 8.5 is now free of all Asperger symtoms, all OCD, all sleep issues, all seperation anxiety, all GI issues, normal organic diet now ( no more GFCF needed), off ABX since March. We've had PANDAS flareups decline steadily with two exposures since february- lasted 2 days or less and we treated those symptomatically. We have also started immune system reeducation and turn off the autoimmune switch protocols since March. We saw a 50% reduction in seasonal allergy symptoms for the first time and as I said the autoimmune flareup has been less and less. we will continue herbal, homeopathic and nutritonal support for additional 1 year I think. We also found that addressing the EMF issue helped IMMENSELY with motor tics. I have address some more heavy metal detox and further emotional restablizing therapy (MFT or TFT works so well). Sorry about typos if any. Jodie