sptcmom

You should ask him what approach is he using? If its just trying to rope you in as a patient?- I would get more info. These so called adjustments can be needed for a long long time. My DS has been limping for two years and a shoes insert after a chiro evaluation helped quite a bit. Not for Lyme but just to fix the orthopedic damage done by Lyme. Some children can use a cranio sacral approach to help with blood flow but again its all individual. You need more info. if you can post what your chiro says more specifically then I can comment more. Jodie

Not enough! She takes Burber am/pm for detox and probiotics (250 billion cfu). Some nights I give her Calm for magnesium. I recently added in Parsley (detox) and Vitamin D, but she got extremely emotional (crying every day) and not wanting to finish school so I stopped. Will try again in two weeks when she is done school. What detox did you use to help with the tingling/numbness? Just saw this Melinda.Is she still the same? is it a herx of sorts? Vit b12 is the main. I use upto 2500 mcg (micro not milli grams)daily spray sublingual and Metabolic synergy as a multi has enough bcomplex without overburden. I mean B6 is very neuro supportive but you have to watch and not exceed 1.3 mgs a day and B3 Niacin is excellent for Lymeies too (the regular Niacin not the no flush kind). DS had tingling, numbness and bug crawling sensations during a herx and before we knew it was lyme too not just Pandas. Went away eventually. To us it was somewhat autoimmune and somewhat neuromuscular. I have aslo used bentonite clay powder (there is a childrens bentonite clay powder for bath which wont clog up your pipes, cant remember the name) mask brush on on arms and neck, let it dry to pull out toxins and put him in detox bath after that in the past- after IVig last May. It worked well and we did it for a week every other day. The tingling usually originates from the spinal nerves or from the shoulder area brachial plexus area so don't forget to treat those areas as well. What about the drainage supplements I had suggested 4 u- Renelix etc. ART check is best but still in a fix you could Try those at 5 drops bid for DD. Renelix is red and has a bit of a taste so mix it in some juice if you need to. Spagyrically produced homeopthic meds are stable and can be mixed. You don't have to follow the long list of precautions like you have to with classical homeopathy meds. so, Renelix for kidneys, Iteres is full body lymph drainage, Sydetox is full body detox are all helpful to start at 5 drops bid and even tid for the first few days until symptoms subside. lemon water is excellent for increasing flow and alkalinity. Warm washcloth around the neck for a few minutes helps increase blood flow and that can he helpful as well. Let me know how things are Again, this info is from my experience. Jodie

Thank you Mary.. the weird thing is that she is NOT sick???? at all It might be her loose front tooth that is the only thing we can think of but it is so off and on.. right now as I am sitting here on the computer she is down at the neighbors house catching bugs... she could care less about where I am.. so that is good we will just need to watch and see I am giving her 250 mg of azith everyday for 10 days per Dr.K then we will see. I hope your Mary is doing ok. Tracie We did IVIG with Dr K last May and found that what many moms on this forum mentioned then, the prophylaxis with only zith 250 is not enough. He gave us augmentin last year at 250 once a day. Other than the herxing/turning back ages etc, DS got sick within two weeks due to two loose teeth and chlorine in his camp pools. I upped his abx to 600 mgs bid and that did the trick. I rotated with Biaxin for 10 days as a boost and that worked to totally stop his up symptoms. In our long journey I have found that rotating abx and having a doc as a source for abx precriptions is invaluable. I know Dr K is hard to reach many times and I had another local PANDAS doc in my corner to help with high dose abx. After high dose IVIG high dose abx to sustain the benefits as log as possible and for a smooth transition for the body when those borrowed antibodies drop off- makes sense to me. Jodie

No, its a neurological not muscular issue. What does help is motrin plus stretching plus drainage massage- deep tugging massaging towards the feet top to bottom and hands back on top. Don't go back and forth- do it like milking a cow for lack of a better example. The motrin will reduce interstitial tissue swelling and stretching opens up the nerve compartments for the nerves to get decompressed and relaxed. You can google good streches for the areas involved. Don't generally start stretching. If it is one sided then it helps to fool the brain into distributing the load by manually tapping the non affected side and tingle it so to speak. This will reduce the tingling on the affected side if its due to an electronic malfunction in the nerve centers due to Lyme. With the packs, warm will give more of a comfort than cold but just that. Jodie

I'm sorry you feel down. Remember its temporary and a disease process. You will come out of it.It is most probably a herx. A change in my abx to Clindamycin sent me in a doom and gloom phase for a week followed by bipolar issues for another week and then settled out. Homeopathic support helped a lot to keep my mind clear, focused on the big picture. Bach Flower remedies Agrimony is for you if you tend to keep those feelings bottled up and simmer internally Aspen is for you if you are openly stressed, cranky, fearful of the future Rescue Remedy is a good overall relaxer Choose one, either Aspen or Agrimony. Rescue Remedy can be combined with either one. You can google where to buy from. I get mine from Washington Homeopathic Products website if my local WholeFoods is out. Dosage on the bottle. I use them for DS and myself. Call anytime if you need to talk Jodie

Two is preferred but one is ok too.

Our children with Lyme and/or PANDAS issues need a good balance of good clean multivitamins with trace minerals and whole green foods.My personal favorite available to the general population is Metabolic Synergy. It usually tests well for a lot of my population. It has trace minerals to address KPU/HPU type issues and cellular mitochondrial repair etc. There are some specific cases where the child will need practitioner only multi but those are not often- Spagyric Greens and few other products from Energetix sometimes need to be given on their own but not often as I said. Now if your child is also taking the Core from Biopure, don't mix the two at the same time. Same day is fine but reduce the dosage on the core by one capsule. And the parents/adults (yes, I do help the parents with ART as well as per request since most are dealing with so much stress, microbes, and nutritional imbalances themselves) have been testing for this one and also been testing good for "Physicians Multi". Both can be googled. Whatever ones you use, do make sure you minimize or eliminate if possible sugar, corn syrup, food coloring. Thats why capsules/pills are better. Both above can be mixed with juice, pudding, whatever. Please also remember this summer not to use sunscreens or make up with titanium dioxide which is a heavy metal sold disguised as a "mineral" sun screen. Any sunscreen is fine and some natural/organic ones don't have titanium dioxide either. If anyone is seeing white spots on their bodies or their childs please PM me and we can talk about if they are heavy metal poisoning/deposits or KPU/HPU and how to fix it. Wait for the skin to tan a little bit for the pale ones or these can exist but hard to see. Also, please do be guided by your LLMD, ND or practitioner if your or your child comes up deficient in any vitamin, most common being zinc, vit D3 and Ferritin. Supplementing to increase levels just because low may or maynot be desirable or even required. Remember the goal is for the body to absorb these from food. If the body isn't doing that already, you won't get much benefit from a multi without traeting the absorption issues. Many individual deficiencies require an individual care plan and precautions for example with low ferritin and iron supplements- calcium, magnesium and vit A can compete and/or block absorption of iron so care is needed.Many will correct themseles once the underlying infections are cleared up since the microbes do tend to drain our nutrients. Jodie

Been following your success story with mold issues and have been inspired. Thank you too for all the info you've posted all along.

It is 100% possible to overcome all these issues in our children and give them their childhood back or whats left of it. I work closely/train with two brilliant and experienced LLMDs. Genetic susceptibility can be brought under control based on your treatment protocols of choice, the order in which you treat- peeling away the layers is a good way but you and your health care practitioner need to know which layer to peel when, and overall lifestyle. Several cases of the wrong stuff being gotten rid of at the wrong time sets us back a good few months. For example I've had overzealous Pandas docs or semi informed naturopaths go gung ho and start killing yeast willy nilly as the first layer to peel and that is a terrible disservice to a child/person.Sure yeast comes up high but it is holding the internal balance of heavy metals and other biotoxins bound to it. Can't just go around killing yeast just because its there. Immune reeducation not immunemodulation is the key to lasting relief from Pandas and Lyme reactivity in my experience. Once the underlying infections are brought under control, this should be immediately followed by introducing the body to healthy organ tissue once again. This can be done homeopathically and cold laser therapy to enhance the effect. It takes afrom 3 to 5 months in most people/kids depending on clinical status. I've seen seasonal allergies, tree nut allergies all down by 60-70% in DS and we started this protocol in early March. The same goes for Mold sensitivity which is down by 50 to 60% by now. He is still affected if he sticks his nose into a flower, sits near fresh blooms for a long period, but just being outdoors is absolutely fine now. Mold wise if away from the basement of a moldy basement house, he's fine if upstairs. His best friend's house is moldy, parents are trying to save up to get it remediated.We stay only in the upper story when there and mostly try to invite them over to ours. Neutotoxin wise- all symptoms of Aspergers have resolved. We had on the spectrum issues start at 22 months of age, progress for the better to Aspergers a couple years later after intensive Sensory Integration Therapy and Homeopathic RX and then with the Pandas and lyme you guys know about. But anyways, its possible.Both my LLMDs are in agreement about this and follow the same philosophy themselves. One of them had Lyme, Bartonella, and MaRCONS, you name it. She is doing very well now,- same protocol as my DS- underlying infections under control, prophylaxis in place daily,etc. So knowing which and when to peel a layer, working out all the underlying infections, emotional rebalancing using homeopathic hormonizing remedies that work on the hypothalamus and Limbic system (repressed emotions come to the surface- its very hard to deal with this herx), working out the nutritional and other hormonal etc imbalances in the body- we used homeopathic rebalancing the organs and cold laser to speed things along at this phase- , this ensures that the antibiotics are getting intracellular like they need to be, next retrain or entrain the immune system to normal organ tissue, work on allergies etc simultaneously and it is absolutely possible to see good results. Immunemodulation, several abx, cysts busters, several herbal antimicrobials are often given to children. These in any combination will not reach all the organisms if the internal pathways are blocked as Laura's article points out. KPU is one of the problems that does need to be treated but will correct with an overall approach. Going after issues symptomatically doesn't always work well in my experience. It takes a lot of energy and resources to treat each and every symtom, find relief, only to find another symptom has cropped up, now treat that one, is it a herx, is it exposure etc. I agree with Wendy that we need to cast the net wide and understand all of the infections going on. Additionally in my experience treating every one of them is a huge overload of medications in the body. The goal should again be to go after the top infections that are killing the immune system and once those are identified and brought under control, the goal should be for our own bodies to be able to handle viruses, colds, stomach flu, regular flu etc. As we know reactivity will keep going down as treatments, if accurate, progress.This has been only been possible naturally, with nutritional, immune, stress, EMF support, avoiding excessive exposure,avoiding crowds, understanding that jumping back into each and every activity known to man is not going to happen for a while, and our LLMDs are in agreement too, which is a big plus. Jodie

Not familiar with his practice just with him personally. So don't really know. Usually ART docs do ART at 1st visit. maybe you need to speak to Lisa to specify you need ART to begin with. Thanks...I'll give a quick call today. So glad to hear your son is doing well and off antibiotics!! Thanks. Its a start right now. Lets see what happens.Im staying positive and keeping up immune support. Goodluck with your appt! Let me know how it goes. Jodie

Not familiar with his practice just with him personally. So don't really know. Usually ART docs do ART at 1st visit. maybe you need to speak to Lisa to specify you need ART to begin with.

DS9 being treated for Bartonella since Sep 2010 with comdo abx biaxin, augmentin and bactrim. Switched to zith in dec 2010.Diagnosed Aspergers since age 22 months, PANDAS in March 2010, one hd IVIg with Dr K last May. He was on tons of holistic meds for detox, drainage, homotoxicology, nutritional support, probiotics etc. He was 100% for about 35 days in Late feb/march and we went on vacation where exposure to chlorine and EMFs set him upticking with motor tics again- mild but there.The Aspergers is gone, and was obviously Bartonella all along triggered by the DTaP shot at 20 months. Now as of one week, he is 100% again. Last four days off the zith. we're staying with the holistic support and nutritional vitamins and probiotics and organic diet.But abx will now be used like with any regular kid- when needed for infections, exposures etc. I will continue to reeducate the immune system with whats normal organ systems using homeopathic sarcode remedies and cold laser detox methods for another 2 months. This has been the one thing thats reduced his Pandas type autoimmune reactivity to almost gone. I had gone a bit wild with the homeopathic drainage last few weeks but thats really the key. That had him peeing every 15 minutes for two weeks and cleard up his channels real well for the meds and supplements to work deeper intracellular level as needed for most if not all of our kids. Fingers crossed and praying very hard. Its been a looooong 6.5 years to get to this point.......... Maybe now I can start working better on my Lyme plus bartonella plus babesia and DH with his lyme Jodie

Did not read yet but a very real connection why girls do better with neurological issues than boys- from autism to lyme to pandas- estrogen is a very protective hormone and the monthly hormonal cycle/surge works the same way.

You will need a working knowledge of the Energy Body and /or Quantum physics to understand the entire concept. It can easily be googled or go to www.klinghardtacademy.com and clik on Autonomic Response Testing. Julia described the older version of doing it still used by many practitioners.That way can be used with older kids and adults.Its a form of muscle testing. Kind of a stress test for your body's autonomic nervous system to see what harms or what calms the body. It can be anything from microbes to supplements to psych traumatic events etc. Advaced ART like your practitioner does will test everything three times to be sure lie I do in my practice. With children younger than maybe 12, it works a little differently. I like to factor in play breaks and that keeps things calm and moving along well rather than a huge 2 hour session.

Your PM is not working. Michael have you tried Gia wellness cell guard? do you like it? or are you using another cell phone protection? Jodie

The conference seems pretty much a duplicate of his East coast Lyme talk in Feb. Here is my biggest concern: Im sure you're all aware but just a gentle reminder that Dr Klinghardt by no means advocates self therapy. There are way too many biochemical changes in the body of a person with Lyme and coinfections.There are several remedies new, old, newly discovered, under investigation, tried out by Klinghardt's team etc- several remedies/herbs for each problem. The liver alone has over 500 functions in a human body and two phases of detox. Different herbs/homeopathics have different effects on people especially developing children. Please, use caution. Dr Klinghardt's methodology works very well indeed if you follow it to the T and like he does - Meaning go for ART atleast once to get the bigger picture of what your or your child's body needs . ART practitioners are over 50% less costly than LLMDs and many can bill insurance based on their specialty. ART can help determine which herb is suitable for which organ. Take biofilms: Garlic, biosil, cistus incanus tea, bitter melon extract, curcumin extract and several homeopathic remedies work. I have seen one or at the most two of these test good for children and children do test differently. Take autourine: if the child is excreting sulphites in urine, you don't want to put those back in. Adults actually and children excrete toxins in urine based on the current treatment drugs/herbs going on and one has to use due caution. Again most of these have other effects, mostly beneficial but may not be needed by all bodies. Garlic is also antiviral and antiparasitic but you don't have viruses/parasites you end up overelerting the immune system and see a stronger herx. Never ending herxes, inaccurately diagnosed herxes, exposure v/s herx, detox pathways getting clogged etc - these problems have been reported by several parents here and I wanted to add my perspective on self treating children. My experiences. Jodie

Kmom- no harm done with neosporin. Its a close cousin to bactroban (mupirocin) and it helps with keeping bugs, buggers and allergens away- reduces by 50% atleast.Neti is difficult to master, can enter the ears, etc but once you know how its very helpful Chest soreness and out of breath after/during chelation sounds like babesia provocation. I was sore like the dickens on my right ribs. Saw stars allday with breathing, swallowing, laughing and any activity pretty much. What are you chelating for? heavy metals? one or more? You will need different D and D agents depending on what you r chelating for. Jodie

Thanks Michael for your post and all the information. I agree with your other post and Dr Kling on this one. Im seeing quite a few children with this complication. Here is wha I see Parents naturally want to be aggressive in their treatment of Pandas and/or lyme symptoms in their child.Many children have psych symptoms as primary and hence a few LLMDs and Pandas docs and some parents see psychiatrists who treat with SSRI, antidepressants etc. next these children get the abx combos, IVIG. IVIG in my experience acts like a HUGE bolus IV abx and causes the so called " turning back tha pages" which I find is no more than a giant herx. Next to this strong allopathic mix, many children are still getting steroids for whatever reason, last resort, unbearable issues etc. Unfortunately most people have little idea of the amount of detox and drainage needed to counterbalance so many treatments and drugs in a child size body. Many systems are growing and developing and nowhere near as good as adult systems which too would need support when on such protocols as our kids. The cost factor is another issue. Another thing I find common in my cases is a mixed understanding of the unique propeties of our immune system and the enormous morphing capacity of Lyme and related microbes. These little buggers are attached to our DNA and can change their protien structure ad render the abx useless after a certain period. This inturn has the immune system on hyper /autoimmune trigger mode again as it detects and deems these changes to be new intruders. Lyme doesNOT live in blood but in connective tissue, even intracellular.The autoimmune component/ PANDAS as some call it when triggered by strep, rears its head again. So here we go now, the child crashes, tics are back, psych symptoms usually worse, drainage pathways clogged. Many parents choose another IVIG, steroid burst, new abx- all very very temporary relief if any at all in my experience. The autoimmune is prevalent in/ is a component of all Lyme cases and may or maynot be along with a strep trigger as in Pandas. Think sarcoidosis, amyloidosis, arthritis, Lupus etc as many of us already know. Herbal antimicrobials are so essential and as is detox, drainage and correction of nutritional imbalances anda thorough sinus check, lung check and MOLD check in the body, in the house, in the school and every building the child spends a lot of time in. Herbals can access and reach the far depths that abx can never do especially with biofilms present. Homeopathics do the same in children with oral sensory issues. Homeopathics also when done under the guidance of a skilled practitioner, can reeducate the immune system and turn off the autoimmunity. Question Michael The autourine therapy for the nose spray- did he say urine full concentration of the urine or make a homeopathic dilution of it? I also know that autohaem therapy or one drop of patient blood made to a homeopathic dilution works the same way to help the immune system with a practitioner of course. BEG spray- Bactroban, EDTA and gentamycin. Mycometrics lab in NJ that Dr Shoemaker talks about will send you a self test kit and upon receipt back they do the mold ERMI levels for you. MARCoNs has been the one area that most of my cases haven't tested and upon testing its has been a component in relapses. Also people who live near heavy traffic need to consider auto emissions and cadmium heavy metal toxicity. Several parents have switched to "natural" sunscreen and many have titanium dioxide. They list it as a mineral. Its a heavy metal.It triggers autoimmune reactions resembling Vitiligo in some kids with Lyme/Pandas and in some it gets absorbed deeper and is a heavy metal toxin. As always, just my personal experience Im sharing. Jodie

Totally Ditto. I echo your sentiment. Hope you all had a wonderful day.

Nope. Doesn't matter as long as you follow your Rx, with or without food etc.

Detox is adding external detox agents to help soak up additional toxins. The body already has an innate mech to do this as we know but needs help during herxes and chronic abx /antimicrobial usage. Drainage is the actual outgo of these bound toxins- sweat, urine, poop, vomit. Drainage organs- lymph, skin, intestines, kidneys, capillaries at cellular level and venous channels. Cellular drainage is often choked in chronic illness or a toxic illness like Lyme/Pandas. MANY many children on purely conventional meds with no holistic support have relapses or never really seem to get better.Then they come to my practice and I have to begin at the beginning with stopping meds, ART and detox and drainage. These children have responded very well to drainage enhancement along with lyme entrainment and autoimmune desensitization with immune system reducation remedies to tone down the autoimmune /Pandas aspect of all this. If cell drains are choked (capillaries), there is cell toxicity and disrupts the entire ATP, mitochondrial activity which is the basis of everyday life. Of thriving, of growing and of extracting nourishment from what we eat. This send the body into autonomic sympathetic system overdrive and intrun vase vagal reflex issues, child will not eat, can't eat, and other herxes develop. Important to note- The herxes can mimic exposure because they will stay on longer if drainage is choked and get worse or add on symptoms which makes less experienced parents or practitioners think its an exposure, they up meds, change meds and the child often crashes since the body is already not handling the meds too well. Gut dysbiosis can result in reabsorption of these toxins and pumps them back into into circulation if drainage is indequate.The soakers will do their job but doesn't really work without drainage. Drainage remedies are seperate from detox supplements. These help the drainage organs work more efficiently. here is a helpful link to understanding the drainage system http://www.crossroads.ws/CRActive/overcoming_toxemia.htm Jodie

I agree with Philamom. Herxing should be tolerated if tolerable and motrin helps for symptomatic relief. Decreasing one dose is no big deal.I wouldn't skip entirely. Some times a slight decrease will solve the problem. It will just take longer.Go ahead and decrease one and if that helps keep it at that and explain to your LLMD. As long as blood levels of the meds are maintained you are good. As long as the child is stable, functional and making progress, its all good. If your child isn't adding on symptoms its probably a herx. Fever isn't with all herxes. Tindamax herxs are bad. The cysted lyme doesn't go down without a huge fight. Im sure you have drainage remedies in your mix which are crucial with herxing. Jodie

Cilantro doesn't "mobilize" metals per se. it extracts and binds. Yes, when extracted, bits can float and cause herxing but the chlorella gets them. Cilantro extract 10 drops in warm alkaline water 10 mins before meals twice a day and chlorella 30 mins to an hour after meals twice a day.Drink grapefruit juice 2 to 4 ounces with the meal if possible. Microsilica is a better choice over chlorella when handling metal detox but very expensive. Expect herxing to be mild if you follow the protocol accurately. Remember the need to detox PLUS drainage. Based on your child's problem areas one usually needs to assure adequate if not above normal drainage in the lymphatic system, liver (actually gall bladder but liver drain products work on GB too) and kidneys. You should have a higher urine output for a good week when peeling any layer in your treatment cycle to ensure adequate drainage.Looser (not diarhea) and bigger poop is a good sign too. Watch for signs of yeast growth. The body will naturally produce yeast when it senses metal "movement". Anger, teeth grinding, oral motor fixations like chewing on shirts, nail biting, white coated tongue, craving carbs and sugar etc. I would up the probiotic just to be safe. My experience. Jodie

Here is the Bands info thread I posted on the Lyme forum. I found it to be very informative. Dr T is very open minded and is finally coming around to this whole Lyme PANDAS thing and researching more into Lyme. He's a great doc.Needs to use more Lyme labs though. Ds's all FIVE Quest plus Labcorp Western Blots and other tests came back false negative for Lyme and Coinfections from March 2009 to August 2010. We wasted all that time just becuase most docs unaware of Lyme labs like Igenex, Specialty, Shiel etc. http://www.latitudes.org/forums/index.php?showtopic=11842&st=0&p=99085&fromsearch=1entry99085

Its always very sad to hear that steroids have become the last resort for any child with lyme. Its hearbreaking also to hear a physician prescribe or consider it. I believe Dr B is a wonderfully caring doctor who wants to help but he is still learning to be Lyme literate I feel. I agree with Wendy here that holistic remedies has a huge role to play right from the start. Trying to play catchup when things go wrong will help but takes longer. Notatum Q. spray is one piece of the puzzle albeit an imp one for prohylaxis which has to be done diligently daily in the beginning. Actually I would say before bedtime in the beginning to help the body build it up homeopathically and mupirocin nose oint. in the AM before school. The main problem I intuitively feel for your child other than cycling is toxin buildup. It can be excrutiating for the body to handle without adequate detox AND drainage support. Sometimes stopping all meds, all antimicrobials that is and focusing on heavy detox and Drain is the key and works wonders on all herx type symptoms.A good couple weekends of peeing and sweating them out all day would be a tremendous help to that little body. Be happy to discuss if you pm me. Jodie