sptcmom

I've read Yasko in depth and she is brilliant and explains methylation in depth. It is seriously cost prohibitive, very narrow focused rather than casting the net wide but its also been very successful for one family in my practice where mom has diligently followed Amy's protocol. So the methylation issue is remedied, now I have to handle the PANDAS, the Lyme, the Co infections, The autoimmune etc. The autism in this child is still there but she seems better oriented, is speaking better, has more organized thought, multisensory processing is better after Yasko's protocol. She is also on my protocols for PANDAS and lyme & Co and on Dr Jones's abx. So all in all Yasko's stuff blended in well.This is two years on Yasko stuff and 6 months on Dr J and my protocols. Fixing one piece of the puzzle like methylation is not a cure but a big step ahead. Im seeing Dr Bradstreet in December and hope to get some mentorship. At my last meeting with Dr Klinghardt, he's the one who suggested I meet with Jeff Bradstreet about his theory of Vit D3, nagalase and GC mAF. I have a good supply of GcMAF sitting in my freezer waiting for pediatric protocols I hope to get from Dr Bradstreet. I am also in touch with Scott Forsgren (betterhealthguy) and as he posts in his blogs too, is having a hard time with the GcMAF shots. Its all so new.Im in touch with a Canadian patient of Dr Bradstreet and Dr Klinghardt and he too says to be very cautious with GcMAF - serious return of inflammation. About Nagalase Nagalase is an enzyme that has been found to be produced by some viruses (such as influenza) and retroviruses (such as HIV, and apparently XMRV as well) and by some types of cancer cells. They use this to inactivate the GC protein (also known as the vitamin D binding protein) so that it cannot be converted to MAF (the main macrophage activating factor). If the macrophages do not become activated, the immune system will not go after the pathogen or tumor. So a high nagalase level means that there is a virus or tumor present that it using it to foil the immune system. As it is lowered, it suggests that the virus-infected cells or tumor cells are being lowered in numbers. Dr Yamamoto originally studied GcMAF in Philadelphia and his studies are mostly cancer related. There is a controversy about the best product. If you read on lymenet you will see people discussing Yamamoto's formula being available in Israel etc. What I find is ultimately the therapies that work are the ones that help regulate one's own immune system. Other than that we have keep supporting ourselves and our children symptomatically to stay functional, go to school/work etc and keep trying to piece things together slowly. I've come to realize that no one therapy, protocol, doctor, guru, medical approach is going to have answers to all of the problems afflicting our families. We have to guide the process ourselves.

I agree with Michael. Its heart breaking to read so many suggestions being only for antibiotics. Bartonella is a very smart bug and extremely immune suppressing. It will morph its surface proteins and most drugs are ineffective after a while. Then there is the problem of strepbartonella organism starting to emerge where bartonella and strep protein factors are similar and they morph into one recombitant organism. Strep is very common in the general population as we know.Yes, I do have research studies and no I don't think its feasible for me to go into all that. Its all part of my learning, reading, R&D efforts, etc and its hard to go back and look for citations for evrything I remember learning about. Im merely sharing what I've learned and seen personally and professionally. A naturopathic approach along with conventional meds is the key. I understand finances are a concern for all of us but there are ways to get the a good bang for your buck if you work with a good holistic practitioner. Its next to impossible to get rid of lyme and Co without a holistic approach added in.Most families on the forums that have seen some sustained benefit are using a combination approach. A simple detox with clay or charcoal is not adequate in the least bit. There needs to be a specific protocol, organ support and nutritional balance. Expecting the body to physiologically handle so many powerful meds without support is futile. Anyways, Im not saying anything I havent said before so I'll stop here. I was drawn to reply becuase of what I've been seeing last few months at work too. Children (two children and one 36 year old male in my practice) whose parents have had them on several powerful antibiotics in rotation for a long time and are now trying to detox and go holistic after almost a year of conventional Rx are having serious autoimmune issues. The two children are now coming up positive for LUPUS as is the 36 year old whose leg muscles have started to get paralyzed and we are doing urgent chelation to get rid of his heavy metal load and clean up so his immune system stops attacking his nerves. The two kids they are non symptomatic right now but with very high Lupus titers- the antinuclear antibodies. Autoimmunity is a very serious part of late stage lyme and neuroborreliosis. Its truly hearbreaking to see this over and over again. I wish there was some way to make parents/people understand the importance of a combo approach done right. There really isnt and most parents try to do the best they can.

Treatment time is to be considered in years not months. Individual symptoms may resolve in months even weeks but not overall remission. That takes time. In my experience adding a holistic regimen to help with the herxing is the best way to go so the poor child's body gets organ support for detox and drainage. if the body has to struggle on its own its hard on the child an dthe family.The LLMDs who have seen the best results advocate holistic add ons for nutritional and detox support. I follow Dr Klinghardt and he is the only LLMD who has been able to achieve anything close to a "cure" for these infections. I can say the same for Dr. Jones. The others I havent read too many long term success stories, with children that is. Most of our children have multiple chronic infections and have been ill for years, these infections brewing under the surface and adding on symptoms. It may take 3 to 4 years easily to get the body back on track as per our LLMD. As long as the child is shedding symtoms its a good sign. A quick search and read of these most informative posts is invaluable. The moms and parents on these forums are tremendously proactive and very knowledgeable. I have learned many good and important things from their experiences. Lyme is always two steps forwards and one step back in my experience. There are numerous posts on the forums that talk about methylation issues, genetic polymorphisms, nutritional deficiencies, dehydration, KPU etc in our children.ALL of these have to investigated and treated in the right order. The order of treatment is VERY imp. If you treat Lyme first and not address Bartonella, its really of no use for example.Another example is intestinal parasites- the big guys. If one treats lyme and co without addressing these first well then your titers for lyme and co are erroneous since the little bacteria will hide within the big guys and some are adhered to the immune complexes too. So the blood tests are coming back negative, IND etc. In my experience , A.R.T. with an advanced practitioner is the most reliable way to diagnose and treat with far more precision that blood tests if the practitioner is experienced and advance trained an duse genuine Klinghardt protocols for diagnosis and treatment. Many of our children have PANDAS too and I was happy to see they are talking about PANDAS at the ILADS conf this year. By God's Grace I will be presenting next year and will certainly revisit this issue. 50% of my patients have PANDAS along with lyme and coinfections. 50% of the children with Autism at my local DAN doctor also have PANDAS from what I heard from him. So its a huge issue and there is rapidly growing awareness for Lyme and PANDAS in my area.Getting the PANDAs plus Autism kids's parents to rule out other infections is a huge undertaking by us right now and we hope to educate thru gentle persuasion and seminars for info. Most LLMDs know the order and some even treat all together. A good holistic practitioner and a good LLMD go hand in hand to see reliable long term results. I speak from my personal and professional experience only.

I agree. Although in the pediatric population OCD and ADHD seem to be the symptoms seen when everything else is asymptomatic. KPY/HPU can exist without Lyme as a genetic error of metabolism which is so subtle its often missed. A lot of children with any kind of neurological immaturity from ADD, ASD, ADHD, PDD, SPD etc can have underlying KPU issues which are making matters worse. We haven't addressed KPU yet as far as using the Core specifically for that. There are several other supplements which can be used, Citramins is one of them. Core is not the only one. Also diet plays an important role as always. Not sure if KPU has any specific physical symptoms. Haven't seen or heard of that so far. I will certainly keep an eye out for chapped lips etc mentioned here. As has been posted before KPU protocol is comprehensive and one needs to address the whole issue of metals being displaced when minerals are supplemented and that comes with its own set of problems that have to handled carefully so as to not worsen the situation. Bottomline do it with a knowledgeable healthcare practitioner. I also aree with Laura to not go in for all thats being mentioned on the forums as a flavor of the moment but to rather weigh your own situation to see if you really need to go thru that at this time. Everything is emotionally draining, expensive, has herxing and needs monitoring. Knowledge os important so we know all the things we need to keep in mind as a bigger pictute. Not everybody needs KPU addressed just because you have Lyme and Co.The same goes for biofilm, gut dysbiosis etc. Those will have to be kept in mind by your practitioner and make decisions accordingly. There is no need to add it on all at once.Not everybody has biofilm, gut dysbiosis etc. My ART testing for each patient so far hasn't come up with one single case being similar to another, not even twins! Many very young children I see don't have gut dysbiosis yet and we keep it that way thru dietary support not supplements as an example.IMHE.

With a WBC count like that I would keep an eye out for Babesia too in my opinion. Any supplement can be done without ART. Its a matter of one's own belief system. Most non ART practitioiners and parents believe that ART is not required of dosage is kept at a pediatric level. There is no right or wrong. Just what you feel comfortable doing.Pro ART or pro energetic testing people believe that some energetic indication is required to see if the body needs it or not. This is also imp when there are so many choices for the same organ.

We do have to bear in mind that most of our kids have multiple nutritional, detox and gut dysbiosis issues. Barely 25% of supplements taken in are utilized by the body.Thats why diet is the single most critical aspect of treating chronic disease as foods in their natural form are absorbed better. There are several other factors like adequate tissue hydration etc that come into play too. This info can be Googled as a nutritional search. Unfortunately most of our kids have mod to sev sensory or vagal issues with eating/food in general. Its been the toughest challenge for me too. before PANDAS I was able to put Ds's vitiligo into remission just with diet control. Its really hard right now. Antioxidant or multivitamins that can be made into smoothies mixed in with real food like milk, juice etc are better options in my experience. Biopure has a purple mix of acai pomegranite which is a potent antioxidant powder and can be mixed in. Wholefoods has a chocolate smoothie powder which is all the food groups Kidz Superfood I think which Ds loves with his hemp milk as a shake. so that I find works much better since its going in with real food. Include some good fats and that takes care of the fat soluble vitamins. Just sharing my experiences.

Do you have any studies or further info on low WBC indicating bartonella and babesia in lyme patients? Or is that anecdotal? All 3 of my boys have slightly low WBC and I have been trying to figure out what that means. They are all positive for lyme, and we suspected bartonella and babesia before we did the blood testing, just based on symptoms. What about the white blood cell parasites like anaplamsa? Do they decrease WBC too? I'm interested to learn more. Thanks! I am an ART advanced level-3 practitioner and an ILADS clinician. I follow Dr. Klinghardt's teachings, have trained with him, been mentored by two top LLMDs and am also a certified homeopath. My views are based upon what I've learned in my clinical work and in class theory as well. Lyme and Co is a clinical diagnosis. Most parents choose to go for bloodwork for insurance purposes. An advanced ART clincian doesnot require expensive blood tests. Basic CBC etc as I mention above is adequate to look at prior to ART and the muscle testing itself gives us a clear picture of whats going on where in the body.Its the best tool I chose to train myself in after hundreds of hours of research trying to help my child and my family. One has to be a believer in energetic medicine/testing, have a working knowledge of Quantum Physics and understand chronic disease at a cellular/biochemical level.There are certain professional techniques we learn that help us help patients. Your Id is MDmom. If you are an MD I would be happy to chat and share my professional knowledge for yourself and your patients.

Ahh - I knew our kids had something in common! My understanding is that chlorella works down stream from the liver - in the intestines. So toxins go into the liver, then into the GI tract. Chlorella soaks up the toxins once they're in the GI tract. Could also work elsewhere in the body but not sure about the liver. However, small doses of chlorella have greater chance of nausea as a side effect that bigger doses. So not sure you'd want to give only a few at a time if you're trying to avoid nausea fears. Chlorella can be taken anytime. The vulgaris variety is easier on the belly.Using chlorella growth factor along with chlorella is a wonderful detox strategy.Chlorella is so dense in nutrients it rarely sucks up ours. Ideal scenario is to take chlorella 1 hr prior to meals, take cilantro 30 mins after chlorella. Cilantro will assist in bile production and dumping after meals and help toxins along to the small intestine. It is essential chlorella already be present in the SI to avoid reabsorption of toxins released. Dosage should be very carefully determined to avoid side effects. Just sharing my experiences.

Im not sure I agree on the burbur.I guess depends on each individual. Artemesia will increase liver enzymes if its incompatable with what the body wants at the moment, I agree. Excellent point regarding Babesia and low WBC count. One needs to keep in mind a low WBC would actually indicate Bartonella and babesia in a patient documented to have lyme borreliosis. An exact CBC, ESR, CRP needs to be looked at to make a determination. Bartonella needs to be addressed first and foremost. With high Bart its very hard to reduce any lyme, PANDAS or Babesia symptoms. When Bart titers are not indicative and its still hiding then the CBC, ESR is used to determine that along with clinical eval. Enlarged spleen is seen after IVIG for a good few months due to the immune system connection. No one doc can explain exactly how IVIG works in "shutting down" the body's own immune system etc. The spleen plays a major role in our innate immunity. When spleen tests on ART it is usually autoimmunity issues. Just sharing my experiences.

Those are very high liver enzymes. sounds like a genetic polymorphism with phase-1 detox like many of our kids have. Many kids have trouble with methylation, acetylation and glutathione antioxidant detox pathways as a result of their genetic makeup.Including my Ds and I. The top treatment is eating crustaceous vegetables like brocolli, cauliflower, brussells sprouts- raw or blanched, not steamed in a salad with salad dressing is fine.Dandelion greens, arugula, cilantro leaves in a herb salad are excellent too. If a child can't do that then other options will be milk thistle with above mentioned exclusions, dandelion extract, cilantro tincture, glutathione (liposomal) either topically or ingested. All those protect the liver.Eat foods high in antioxidants blueberries, pomegranite, acai etc. Another combination thats great is Apo -hepat drops with liposomal glutathione for full coverage. Eat good lipids which will ease the burden on the liver for fat soluble vitamins and abx- coconut, flax, avocados Again, dosage varies based on age and weight. Such an elevation in liver enzymes is often an indication in my practice that the body is telling us to start switching to herbal abx which are more effective and more penetrative anyways- if identified correctly with ART. can't generalize on that one. Jodie

Hi That should be fine. Both our LLMDs order these for us thru Quest. But labcorp is same thing so no worries.No special labs needed for these.

Hi You mention cabinets. If these are wood cabinets, Please do keep in mind that bleach will NOT kill mold on some surfaces like wood, drywall etc. here is alink you can read http://blackmold.awardspace.com/kill-remove-mold.html What about home owner's insurance for mold remediation? In our area they will pay for the whole thing if documented correctly. Now, the way I see it is the treatments are not reaching the microbes. There could be an issue with biofilm, yeast, mold, KPU and just the fact that most of your son's microbes are intracellular and the pathways are blocked with toxins so the meds cannot reach. Sometimes inadequate hydration will do the same. So you have a few things to look at. There are a lot of noce posts on mold and mold testing here on the forums. If you can search for those you will get a list of the Shoemaker panel of tests that maybe your LLMD can run so you know how much of a role mold is playing for your son.

Thanks so much for your research.But there is no mistake. I myself used to do peds neuro and the MRI has been read by one the tristate areas best peds radiologist, also Dr Jones himself, the peds oncologist and she even showed it to her peds oncologist radiologist just to quadruple check since Im a friend. Anyways, it depends on the weighted or not signal of the MRI and how its done. This was a T2 weighted image we did without contrast- very technical but the results are final. I wish to God it was different. I did indeed hit the good old textbooks again but nope. It is what it is. The areas are slowly beginning to clear from the edges so we know the meds are working. Very sweet of you. Thanks so much for caring.

tpotter -- i hope your plans work out and you get the help from the IVIG. certainly sounds like you have a lot on your plate now, if you find some extra time and wondering what to do (Ha!!), i'd love to hear more about your thoughts on the IVIG and the asperger behaviors -- the actual observations and your beliefs about what/how they were brought about! was there a regression in that social awareness or is it still lasting? fascinating! good luck! I know you didn't ask me but since DS has Aspergers too or had Aspergers since 18 months of age, I thought I would jump in. ALL of the Asperger symptoms have been gone for about 6 months now. Things started getting better immediately when we started treating for Bartonella last year. IVIG with Dr K in May 2010 and Bartonella treatment starts with Dr J in August 2010 and 6 months later after steady improvement DS no longer has any Aspergers. He has numerous other issues but not that one anymore.

Thank you. Actually a friend and colleague of mine is a Pediatric Oncologist. She loves my DS as a family friend and she was the one who diagnosed him with PANDAS last year. Extremely knowledgeable. When you do cancer in kids, you have to be a crack diagnostician and she is. As is Dr Jones who used to be a pediatric oncologist too. They both helped me out with the MRI and diagnosis etc. We were trying to rule out cancer, osteomyelitis and Babesia. A series of MRI's later we got everyone to agree to treat with minocycline for a broad sweep first and then for Babesia with Mepron. We chose not to go with a bone marrow biopsy. No use rushing to the ER. They can't do much for this. I just gathered my docs around and we figured it out. DS is still limping with ribs hurting now from a Mepron Herx but is able to kind of get around more. The bone marrow around his pelvic bone (iliac crest area), his pubic bone and the right neck of femur was all black with inflammation on MRI. I almost passed out and my heart went still for a few moments when I saw that. Im very very quirky about any kind of invasive procedures. Thats just my life experiences with those have been horrible. I lost one brother to a badly infected IV line and he ended up getting encephalitis and passed away in the hospital in 2001, at the ripe old age of 42. I've just seen too many medical mistakes. SFmom just posted about babesia being reported at bloodbanks I think. Then my nephew's spleen burst due to a hospital acquired infection during his biweekly transfusion. Everybody has a reason for being who we are. This is who I am. My experiences have made me what I am today. Just doing the best I can based on my experiences.

Thanks so much. I appreciate your input as well. Your experiences and advice have been very valuable and crucial in my search for mold issues in our family. All the work and research you've put into it is amazing.

DCmom please have a reread of what Ive written. I absolutely resent your accusatory tone. We all have enough stress without being at each others throats. Please don't read my posts if it upsets you- you have a choice. You stand by your opinion and I stand by mine. We are both moms trying to help our kids. I think you know very well I have pursued conventional, abx, IVIG, steroids you name it for my son and WILL do so again if I need too.I continue to pursue a combined approach. We ARE and always HAVE been on abx plus detox as are tens of mothers on the forums. My son is NOT, I repeat, NOT healed at all. We are dealing with lyme, Bartonella, Babesia, Mycoplasma,Mold, MARCONS, PANDAS and viruses in EVERYBODY in my family including me. We have seen some 100% days but its a long road.We had a major exposure to strep in August with my son UNABLE to walk,excrutiating leg pain, unable to even move, turn in bed, sit on the floor or go up and down stairs. Turns out it wasn't PANDAS but the exposure to strep had provoked Babesia - both species and together they were attacking his bone marrow. The MRI of his pelvis and thighs showed the bone marrow BLACK with inflammation.We used high dose minocycline, hyperbaric oxygen and detox. He is still limping and can't do stairs but we got rid of the wheelchair and he can now go to school. Mepron helped tremendously as well. I remember you gave me excellent advice on loose teeth and the ramp up to expect, how to deal with etc last year when I was new to this and I appreciated your opinion. I respect you as a mom but please don't disrespect another mom and her experiences. I know of several children that have become horribly worse on steroids and IVIG. I know of one child being treated by the famous PANDAS doc who after 5 IVIGs and steroids is now in a NY PSYCH ward as an inpatient for the last two months. This child also tried PEX and everything to no avail. Now mom has approached a NYC famous homeopath for help and the child is healing, calming down and hopefully can come home non homicidal and suicidal. he is only 14..... Thats just one story. I know of several others. On the flip side, I know of several stories that IVIG and sterods and PEX have been life savers but need to be continued. My two nephews have Thalassemia Major and they need blood transfusions EVERY two weeks now that they're older and multiple IVIG for YEARS now. I am their godmother and its hard for me to have seen that last 12 years (I go with my sister once a month). I know its just a needle prick, just an IV etc BUT the kids go thru a lot of emotional trauma.The two little boys are a psychological mess emotionally, it breaks my heart. It doesn't happen the first few times, the kids kinda deal but when its year after year of IVIG, transfusions, needles hospitals, it does take its toll on the little guys. My poor little nephews don't have a choice due to their illness. My son has tremendous emotional trauma with IVIG. Dr K was wonderful with him as were the nurses, God bless them but if I can avoid it I won't go back that route.So yes, I am looking for a cure. I will search the ends of this earth to find it. I have merely highlighted my experiences and learning. Numerous wonderful moms on this forums have been my guiding angels this last year and I want to post what I've learned. Maybe it will strike a chord with one family out of so many posting here. Maybe people want to hear both sides of the story. I have been thru it all Eileen. Still going thru it all. NO lasting remission so far. You're lucky to have remission after PEX. God Bless your girls and I hope they continue to thrive.

No, all Im saying is please keep up the Detox as long as you are being treated. When your body can hold its own for a good 4 to 6 months off everything except the positive lifestyle changes you made during this journey. Thats usually my yardstick after I finish immune regulation or entrainment therapy as a last step with a patient.The last step may take 6 months or more in itself. ART is used for consistent monitoring. And again please, just sharing my learning.

Michael explains really well. In energetic testing any substance blocking the energy (healing, biophoton, "the field") pathways are identified. Energy pathways are where the body stores information to heal and stay in harmony with the environment. Various biotoxins block this communication plus information network and the body is unable to heal itself or even figure out how to successfully utilize the external help being given in the form of abx, supplements etc. Thats is what an ART practitioner reads when he does the muscle test. Yes, there are ways a practitioner can prioritize, locate, hone in, do a multilevel scan and several other possibilities like is there direct resonance meaning is the substance already in the body is that why the test is what it is- very hard to understand without a working knowledge of Quantum physics and the bioluminosity works of Dr Fritz A. Popp. In brief, the higher level of ART a practitioner has attained, the more refined his/her technique. There are levels 1 to 3 and a level 4 is being worked on by Dr Klinghardt for next year I believe. For my level-3 class there were only about 100 or so practitioners from across North America. There are numerous finer points that a higher level certified/trained clinician can work on and interpret. All clinicians are expected and trained to practice personal emotional and medical hygiene which includes the configuration of office space, assisstants etc. For example my clinic is triple grounded, earthing set up, no EMFs, no mold,no chemicals, no allergens, brilliant light, natural light, natural ventilation etc- you get the picture. Also, Laura, a skilled practitioner trains his body to be one of a healer inspite of personal struggles. Deeper states of meditation allow us to resonate our Lyme etc on different frequencies than a patients. An ART session is usually a couple hours long, is gruelling and exhausting for the clinician and the patient- which is a good thing and it means that the doctor was able to successfully intersect his biophoton field with the patients and has started the healing process. It is also imp for the doc to take a 15 minute break immediately after the end of a session/evaluation and use Thought Field Therapy techniques in privacy of his office to disengage from the patient mentally and energetically. Which is what I do and then am able to hydrate myself and sit down for an after session consult with my patient. Its quite the process. Its literally an art form and needs to be practised not as a quick office visit but take time and genuinely evaluate a patient diligently. Choosing a practitioner is a crucial step. Don't be afriad to switch practitioners to find a good match. Unfortunately insurance issues rule most decisions even though ART docs cost WAAAAAAAY less than some of the superstar LLMDs and usually the only bloodwork needed is a good old CBC ESR, Lipid panel and metabolic panel.

Absolutely didnot mean to start an argument or hurt any feelings. We're going going thru enough to last us a couple lifetimes so not my intent at all. Just sharing my experiences, what I learned personally and professionally.I follow these learnings/theories/beliefs/whatyoumaycallthems all thru my personal and now professional journey with all this. I stand by what I said as my interpretation and understanding of what I've learned. No I don't wish to change anything. Different people with different backgrounds will understand things in their own way. I am sharing what I've learned and understood in my head.I do say that in my original post. Its my experience only. This is one of the most intelligent bunch of parents I've ever 'met" and you can take from my post what you like or chuck it as ramblings, its up to you. To each his own by all means and with all due respect. Pure PANDAS does exist. I know. And I know more than a dozen but its all an assumption. To what extent is it "pure" no one knows. Some children get well with a couple IVIGs, some even have the epiphany moment but most don't. Its still a symptom only. Its a symptom of an immune system disorder. IVIG debate has gone on forver too. Each doc has his own interpretation of how it works. I have mine. I don't have to justify that to anyone I don't think.Its my opinion and I have had excellent results with my theories by God's grace. There is no right or wrong. All parents make decisions that work best for their child and family. Its just Eastern v/s Western medicine . Suffer thru the herx and treat the root cause towards a cure v/s treat the symptoms for a life time and try to stay functional thru the journey. Each one makes their own choices. There really is no right or wrong, just what works for your situation.

IVIG every eight weeks is like living on borrowed immunity. I would love to hear about any child's immune system truly truly benefitting from it. I am yet to hear a child holding their own once regular IVIG is stopped. The epiphany moment is extremely rare. Its next to impossible to understand the logic of foreign antibodies being able to entrain your own to"behave". Some parents do talk about the epiphany moment but it can't be explained logically. Maybe they had a mild case to begin with.IVIG being used for life threatening autoimmune diseases like Guillian Barre syndrome is widely used. At that level of severity where the actual muscles are paralyzed, nerves can't process signals etc and the person will die once the breathing muscles are paralyzed, IVIG is a huge factor. Repeated IVIG for such things I have heard of for many many years. Im guessing the same principle is being applied to PANDAS since its deemed autoimmune. The question is how directly single-cause autoimmune is it? Absolutely pure, strep only PANDAS is also unusual. Its rare even. Many parents consider it to be pure PANDAS only because they haven't found something else, havent looked for something else, the child is relatively stable so they're not looking anymore or worse is when the additional infections are overlooked due to denial, lack of understanding, non cognizant docs- myriad of reasons. Either ways, IVIG is a band aid. If it wasn't it would work better and work faster. Its a huge procedure, its an invasive procedure. Kids with Guliian Barre or cancer related issues that get IVIG DONOT herx from it, there is NO flipping back the pages etc- just healing, thats it. They start recovering because IVIG is proven to work for these serious conditions. In my experience inflammation is the trigger for PANDAS in our kids. IVIG is not antiinflammatory I don't believe. It is borrowed immunity, plain and simple. Once the foreign antibodies drop, its over. Inflammation is a symptom and it brings about several other symptoms like OCD, rage etc. Treating symptoms you get suppression not a cure.Need to find out the cause of the inflammation and then can start healing for real. OCD, PANDAS etc are all symptoms of brain inflammation. Why is the brain inflammed? For most kids its a variety of factors in play- psychological like stress, trauma, biochemical like heavy metal toxicity, xenobiotics, biotoxins, glutamate, physiological like thick blood etc. Then there are those with underlying multiple chronic infections. ALL these factors when addressed for a few years will really help the immune system recover. The KEY is knowing what to treat first and there after so on. The steps backwards seen by so many is due to inadequate nutritional and detox support and also due to incorrect order of treatment. The layers of the onion have a different order of priority for each child. They all have to be peeled gently, accurately, in the right order and then and only then can we get a real cure. Just sharing my experiences.

Hi All There are numerous ART docs in the country. There is one doc being very heavily promoted by several moms on this forum. A wonderful, talented, brilliant doc who is a one stop shop for conventional meds and ART. He gets results, takes insurance, and is almost perfect in every way. This is all accurate information. But there are several other EXACTLY similar ART docs around the country.There are numerous A.R.T. docs who are also MDs, DOs, Chiropractors who WILL take insurance in the north east, in Pennsylvania, Texas, Washington State etc etc. I have posted this before. A little research can be very rewarding in terms of overall benefit for the family. I understand that word of mouth is powerful and so be it but I had to post this for those parents struggling financially. Its very easy to be swayed when we hear lyme and co have been eradicated by any doc. That is another area of caution I would like to post is that eradication in months is not possible. This comes from the very creator of ART, Dr Klinghardt. With accurate herbal tinctures it is possible to keep things dormant for a bit but without correcting the internal biochemical and physiological changes in the body, its not possible to keep those suckers at bay. Antibiotics will inhibit the growth, herbals can kill but without one's own immune system awake and running normal there is NEVER a cure without own immune system entrainment. Period. It doesn't matter how many rounds of tindamax are prescribed because its now in the cyst form etc. This stuff will mostly all come back in a few years time for those who believe lyme and co is gone in a few months. I have seen numerous cases, one can just go on Lymenet and see how many young adults are struggling with reappearance of symptoms. I have two young adults amongst many others who stand out, both in Ivy league schools unwilling to go back. They are embarrased by brain fog, memory issues, aches and pains that have returned after TWO years of being told its been eradicated since ART and regular bloodtests came back negative. ART is energetic muscle testing. SO many factors matter during testing. Does the child have the herbs/meds in her body during the test or not, hydration status, EMFs in the room, etc. Please read up a bit on energetic testing. The goal is to get your own immune system to help you keep the bacteria in check. All holistic testing and treatment is of the same philosophy. Immune re-education and entrainment is KEY to recovery. It takes years not months unfortunately. NOT the years a child has already been sick but from the point of recovery. That is why SO many people are going to Germany to try Immune therapies, Biophoton remedies to help with a lasting cure.Numerous posts on Lymenet. It is very very common to have an initial reduction in bacterial/microbial load once the accurate herbs and meds have been given to anybody, adult or child. It is very common to see many major symtoms resolve right away. That simply means you have finally hit upon the right combination of herbs and abx. It is not a cure. Ive been thru that myself and all my patients do too. The feel good lasts for about 3 to 4 months. When we switch the abx or Herbs that goes away but its then time to address other issues. Please never ever should you abandon detox and drainage for your child. Please remember just because all the symptoms in your child are under control doesn't mean the diseases are "cured". Here is the vicious cycle I have seen so many times and anyone of you can read on Lymenet too.Many meds, herbs will bring about a symptom control - to see a child symtom shedding is a God send - this happens when the accurate combination of abx plus herbs is hit upon and only ART can help with such accuracy. Tindamax etc is given to address cyst form etc so everybody is happy that everything has been addressed. But what about the internal organ system havoc wreaked by the bacteria? What about the out of whack immune system? I speak from personal experience only. It blows my mind how parents can believe being symtom free equals being disease free. I would request all parents to please inform themselves instead of jumping on the bandwagon. I've heard of parents selling their homes to travel to these docs being so heavily promoted here.Its sad to see this when there are so many options available. Most top ART docs are in the north east and washington state. Florida, Pennsylvania and Long Island , NY , Flemington NJ have the top rated ART docs, Klinghardt himself talks about them regularly. Please call Debbie at Klinghardt Academy (www.klinghardtacademy.com) for more info. Please look at your choices before you refinance, sell your house etc. Again with all due respect to all experiencing success with ART, all those amazing parents who have tried everything and everybody andfinally hit upon the right combination of everything.Just please go in informed and keep reading up on newer methods and on other Lyme forums too.

The easiest way to understand is its a kind of neuropathy symtom. The nerves misfire and misinterpret due to information being scrambled at the myoneural junction (where the muscle meets the nerve ending)by the microbes.Can cause a myriad of sensations mostly unpleasant and can mimic neuropathy, myopathy etc.

Bone pain has no specific manifestations. You are describing muscle insertion points meaning where the major muscles attach to the bone. That is a very painful high blood supply area and very often can be due to bone marrow inflammation because the growth plates are right there as well. Sometimes labelled as growing pains which is actually a diagnosis of exclusion. That too is fast being replaced by Chronic relapsing osteomyelitis, an autoimmune condition associated more in girls than boys with lyme and co. Copper in trace amts is excellent for most of our kids. Copper is used as "bullets" by the immune system so if depleted it can lead to ramifications. ART or any other ebergetic method is best to determine dosage etc.I would stop copper if nausea occurs whihc means too much copper. Sometimes copper in a multivitamin buffers it (Physician's multi) but not if you're on a KPU protocol and doing the Core already. More like maintenance. Bee venom oint is great when used with SyCircue lotion for inflammation related aches, pain, swelling, edema. Do test for allergic reactions with a patch test first.

Dysaesthesias are part of lyme and co. If its the growth plate regions of foot hurting its Babesia bothering the bone marrow. The ankle can be circulatory pains and KPU related. Stay alert for swelling around ankle or foot. push drainage do some lymphatic massage stretching will help too. bee venom ointment really helps. Stabbing pains can also be metals being mobilized and being dumped at unwanted sites. But u don't think its that so you know. But otherwise during KPU therapy using a metal binder like microsilica or chlorella high dose is highly recommended.