sptcmom
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What Ive learned is other vectors for lyme and coinfections can be mosquitos, fleas, bed bugs, lice, pet saliva and dust mites. Dr Schaller's book on Bartonella lists these as do many other sources.
I have one family of Lyme and coinfections in my practice that started with grandma getting it thru bed bugs. Another a child with Lyme induced Autism got it at 7 months of age thru a huge mosquito bite that got infected for two weeks and at 22 months he developed ASD symptoms. Now 80 % better and partially mainstreamed. Sees Dr J and myself. Many cases.
Maternal Fetal trasfer- numerous studies out for a while. have several patients. Latest patient is 8 weeks old. GI issues, Allergies, Liver issues, muscle twitches since birth. Mom just wanted Holistic so I treated him. Now after 3 weeks symptom free. amazing. But yes. My DH was also transfer from me.
sexual transmission - large amount of anecdotal evidence. Dont know of any studies.
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The Western Blot came back with a positive on band 31 for IGG results and IND on band 41 for IGM and IGG. I guess that means nothing though. So confused and actually kind of mad I spent $1400 that day for really nothing. NOt saying I wish him to have lyme. But I sure would like answers and to find a way to help him.
Band 41 is Flagellin. and an Igenex double star band. Most certainly not insignificant. Spirochete, Mycoplasma, C diff are all flagellate and few others.
31 is also significant from what I know.
IgG or IgM are both significant with immune suppressing infections.
Also what Ive learned is the sicker one is the more false negatives. Some of my patients that get well faster or respond better are the ones who're CDC positive on the Western Blot thru Quest/Lapcorp.
Multi infections suppress the immune system and depelete the body of key nutrients. The titers we see are antibody responses. Antibodies are made by the immune system. A sick immune system with inadequate nutrients, autoimmunity etc certainly can't make a ton of antibodies. Methylation issues complicate this further.
We spent 1400 too and all negative except Band 41 for my 10 year old. Dr J said Bart is the first issue as per clinical picture. After a YEAR of treating and therefore lessening the load on the immune system and doing holistic protocols to add the nutrients scavenged by infections we finally had everything light up on Igenex.
Lastly Lyme is a clinical diagnosis and labs are supportive not diagnostic. Many docs treat to provoke before testing. Makes a lot of sense. Many will treat other issues like KPU, Methylation and organ support concurrently to help the body along.
My experiences and learning so far.
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DS 10 has made consistent progress since diagnosed with Aspergers age 22 months, CRMO at 7 yrs, PANDAS age 8 and since then Lyme, babesia microti, babesia duncani, mycoplasma, bartonella, Rocky mountain spotted fever, failure to grow, vitiligo,and multiple genetic mutations for detox, whew!
Currently- Normal immune response- no PANDAS, Has cleared Aspergers, socially normal, normal in school, 5th grade, growing ! still in 3rd percentile but on the chart!, genetic markers toned down thru epigenetic treatments, detoxing ok now, no anxiety, no OCD, no seperation anxiety.
We did regression hypnosis and traced his seperation anxiety to my horrendous labor and emergency C section. Once we resolved those buried fears he's been great!Sleep normal, Language normal, learning to be assertive- work in progress.
Recently had a huge Babesia flare after a really bad bug bite and had his pelvic osteomyelitis (CRMO) again. But Mepron resolved it. Still on Mepron, Homeopathic and herbal maintenance program now. I will continue Mepron for minimum 6 months at this point.
DH and I are on an entirely herbal and homeopathic regimen and doing well with clearing the infections, cognitive and physical symptoms. My Aspergers has cleared too after all these years as has my OCD and anxiety. Hoping to keep my cleaning OCD. That ones been helpful.
Psychological healing work has helped all of us. Mostly unconventional methods! lol.
As you guys may know I have been blessed to have been able to train with the best of the best and helping so many families in my practice. Will present some of those protocols at ILADS in a couple months.Limited time but will try to cover whatever I can cover keeping the stringent ILADS guidelines in mind. Should be fun.
Had a weird kitchen accident with a knife that got away and sliced three tendons of my right hand! yikes! Anyways had hand surgery and recuperating. trying to be lefty. Please overlook typos.
Please don't lose hope. There are so many conventional, unconventional, just plain out there sounding methods. We owe it to ourselves to look into everything, research and see if thats something that can help our families. Please keep trying.
I am glad I listened to some of the brilliant moms on this forum. SF mom- will never forget your help and advise, ever.
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I'm looking for homeopathic or other natural treatment for removing virus, bacteria, infections that are not clearing. Stuff like mycoplasma, strep, pneumococcal pneumonia, really a wide range of stuff. Does anyone have any resources or places I can start to try to figure out what we might want to try? My girls test high for a few things and I'd like to try something like the deseret biologicals lyme series, but for other stuff, not lyme. I see they have some interesting products so I'll continue to check into that.
I have a zyto printout that gives me tons of data that I don't know how to read. Hoping our natural doc will be able to help but I'm concerned he's not concerned enough about the importance of us clearing this stuff. On a good note, lyme is not anywhere near the top of the list so maybe we are doing good in that arena. I really don't know though. I'm completely confused
Thanks,
Susan
Hi Susan
I frequently encounter this situation in my practice as well. It depends on the skill, knowledge and experience of your holistic practitioner. The only way to break thru a treatment plateau inspite of having addressed KPU, Biofilm and other typical blockers, a homeopathic practitioner can detect which custom frequency each issue resonates with your body and customize each remedy for you. The results are often amazing.
Two things in such a situation
1) Autonosode therapy- homeopathic
2) Imprinting or inverting the patient's own vibrational frequencies or sometimes even specific toxins on top of the terget remedies/drops being used by the patient inorder to customize the treatment for the patient.
Then for those who wish to be more aggressive biophoton therapy with the original Bionic 880 works well too but muscle testing is best to see if thats what your body needs. I have no experience with the American version but my research tells me to stick with the original.
happy to talk further thru PM if you like.
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Many thanks for your kind words Juliafaith :-)
Totally agree about muscle testing. Especially ART since it gives a practitioner the quantum option of using Dr Popp's bio-individual light resonance to detect impending problems or urgent deeper issues. Also depends on the open mindedness of the person getting tested. Children do awesome. I have had to change the method for kids to accomodate frequent sensory breaks but works great. two beautiful experiences I had - one 5 year old tested for impending Babesia in June last year (along with lyme) and Dr J found Babesia positive with Igenex FISH 5 months later! We were both happy and our patient has done great- Lyme induced Autism is now just mild Aspergers after less than a year!
Another one is just two months ago an ABA therapist I see for severe Lyme and Co is pregnant. She wanted me to test the baby. used the light resonance ART and was able to determine the baby's head position so I could test accurately! The lady told me her ultrasound showed the same position twice already! That was so amazing and satisfying to know I can help a fetus heal in utero. Mom and baby are doing great on homeopathic nosodes and sarcodes that the baby tested for not the mom.
Alinia
yes I know about the situation. Some people have had to pay out of pocket some ridiculous amount of money for Alinia. But Dr Kling and I have our sources as Im sure you know too probably.
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Omg that is so scary! I hope he is ok!! Thank goodness he was wearing a helmet. Ds never wants to wear one b/ c no one else does and so it's uncool. That is always my worst fear on bikes and what not. I hope he is doing well!!!
Mar
Thanks so much Mar for your note.
He is doing fine. Cannot even see scratches on his face after 6 days and just got a small cast today. He saw his ND yesterday and got a bunch of injections on his head which were not pleasant but are supposed to help keep scar tissue to a minimum. This is one brave 14 yr. old! Helmet was possibly a life-saver!While at dr.'s asked to have his Valcyte (anti-viral) tested before refilling it again. He is done! This has been a long continuing battle so very happy the viruses seem to be under control now. Just working on throid/detox now. Thinking that dr. will do blood tests next time around to confirm everything.
Hope treatment is progressing well for your family. Take care.
Alinia induces parasitic larva die off in the brain and the die off reaction can cause seizures in some people as per my learning. Dr Kling sometimes will give a tiny dose of prednisone maybe 10 mg to a patient on Alinia kind of similar to what Dr Kovacevic does if needed if patient starts vomitting and cerebral reactions. I've seen similar reactions in my patients on Alinia but no seizures. Havent had to use Steroids yet. I start off with muscle testing the dosage and recently one 42 year old woman tested at 3 days on and 5 days off of Alinia 500 mgs BID and thats what we did and she's been fine. Previously she was doing the standard 500 BID daily and the brain fog was debilitating.
Additionally I also recommend Galactose to help drain the ammonia from the brain.
For my DS we did 5 days on and 10 days off at 250 mgs BID. plus for brain drainage we did galactose and glycine.
Just some of my experiences.
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I'm posting this for someone in our support group. She's having trouble getting on the board. Her son is 17 and has been suffering since he was very young. Within the last year or two, diagnosed with PANDAS, LYme and Bartonella. He has had at least two IVIGs. He has made some progress, but not enough. He sleeps about 18 hours a day....I'm not sure what abx he is on, but know he is on some. Here is her question...
Dr B has just recommended we add 600mg of ibuprofin 2x daily to DS's drug cocktail and I was wondering if anyone out there had any experience with this approach. We are in battle with CIGNA trying to get more IVIG covered and carrying on with a ton of antibx in the mean time. On ray of hope is that H's bartonella rash is disappearing!
Thanks.
DS has lyme induced autoimmune recurring osteomyelitis which is his last issue left. Treating autoimmune is a tricky terrain and needs to done right and in baby steps if one ever hopes for the body to independently regulate.
DS gets episodes of screaming pain in his pelvis, inability to walk, bone marrow swelling etc i.e. osteomyelitis like symptoms. I immediately put him on an anti-inflammatory and immune modulating homeopathic spagyric cocktail of Pekana biological medicines along with topical application of remedies in lotion form. Pleo Sanum has a fantastic product that European athletes use and it works like a charm. I alternate that with Aleve or Motrin so this way I need to do the NSAIDS only once a day instead of two. I do the cocktail and cream twice even three times day.
Works very well on my pediatric and adult patients too.
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does anyone know how to tell the difference? my DS has some on his "love handles" but has put on a few pounds recently. Can they biopsy them to confirm bartonella? Or is there something very distinct about them that differentiates them from a strech mark?
DH had purplish ones on his love handles both sides that faded a year into treatment. DS had a HUGE black mole on his shoulder blade that is now 1/10th the size after 1.5 years of treatment. Both are Bart issues with some pappiloma virus added in.
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LLMD said clean up gut first this has been a big job and at times seems impossible since my son age 7 has zero motility! Been using Mag Citrate, Mag Oxide, Vit C, Taurine, Zinc, Enzymes, Aloe Vera Juice, Fiber, Diet rotation (very difficult) but managing to puree veggies into food hidden. Custom Probiotics, SAch B, culturelle, prebiotics biotagen and a few others rotated. Melatonin, milk thistle at night. Other supplements like multi-vitamin, vit d, quercetin, pycogenol, low dose naltrexone, transdermal glutiathione.
Abx are Azithro, Bactrim, Flagyl, Ibuprofen, these are the meds I am sure slowing down the gut, but keeping the brain sane.
He has made great gains but obviously still sick. He has a mild flare every 7 days does not last long usually some unusual OCD, Constipation severe, anxiety, fatigue, sleep issues. Managable and brief in nature but clearly sign of Bart cycling on day 7. Since starting this protocol he has had some fabulous days too and fatigue and mood issues are nowhere like it used to be. Itching is a huge problem for him and I am sure this is related to the constipation.
I am noticing the protocol that helped tremendously has plateaued. Any ideas to get the gut dumping the bad stuff again? Diet and recipes would be helpful too. Thank you in advance.
He is so much better when the gastro tract is moving things out. Sigh...constant battle.
Just briefly. your story resonated with me and I have a few minutes I can reply
I see this happen quite often in my practice too. if you have a holistic practitioner or your LLMD they will understand this
One can't just force feed the gut supplements for local milieu improvement. those will work short term but need to be combined with neuroendocrine support and hypothalamus regulation support. If not the gut adapts to the supplements and becomes dependent. in cases like your sons, motility issues are mostly due to low tone in the large intestinal smooth muscles and sympathetic nervous system upregulation. Neuromuscular supplements help too. A program to wean the gut off magnesium etc needs to be in place along with a muscle tone builder like carnitine- it needs to be done under the guidance of a health care practitioner. otherwise the dosages of all the force fed stuff needs to be increased as the gut adapts. Adrenal regulation to regulate stress in the gut and subsequently in the brain needs to be in place too.
I also don't notice any toxin binders like microsilica, bentonite clay etc in your protocol. Those are important to have in place too.
Google Milk Thistle interactions and double check its not cross reacting with your abx as it sometimes can.If yes then thats the reason for additional sympathetic upregulation and you need to substitute milk thistle with other liver tonification remedies.
Any new protocol will shock the system into alert and things work beautifully for a while but if its not addressing central regulation then things plateau.
Best,
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The dr's in list are all Level 3 practitioners.
The list you've posted are certified at a basic level, not advanced. The info is at the bottom of the email.This was the very first certification ever and that too attached to a very expensive seminar. Seemingly one has to re-attend the seminar in order to be able to take the test. It may not be financially feasible for practitioners already trained at level 3 to attend another level 3. Maybe things will be more streamlined in the future.
ART has been around for more than a decade. It is a wonderful tool and there are many good officially trained practitioners. Do please keep in mind not yet certified doesnot mean not yet officially trained by the Klinghardt Academy instructors. Marc Schwartz teaches level 1 and 2 as do many other instructors. Dr Kling teaches level 3 advanced himself.
There are many ART practitioners level -3 advanced to level 1 basic all across the globe. I am a level 3 practitioner myself with official documentation etc and I know of many others local and national. I have trained with Dr. Klinghardt himself at my level 3 training and in his office in Seattle and in Germany. This certification concept is something easy enough but very new and it will take a while for all practitioners to find the time to attend these seminars and get it done. I would suggest you call Debbie at the Klinghardt academy to refer you to an experienced practitioner. She is a very honest, upfront and genuine person who will give you referrals as she understands this certification thing is new.
I am sure there are ART practitioners in every state. I know Dr Harris, LLMD in California has an ART practitioner in his office a few days a week or month can't remember.
AK v/s ART is a moot point. ART was born from AK. ART is more detailed and uses more quantum physics principles per se. AK and ART are both considered bioenergetic testing and it all depends on the skill and experience of your practitioner as to the accuracy. My personal Bioenergetic doc is phenomenal and doesn't use ART but rather basic AK and cranial rhythms Very accurate and very precise. So depends.
Not supposed to use 'ART" abbreviation any more due to some legal stuff but its so hard to keep typing Autonomic response testing every time. oh well.
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My daughter's Sed Rate has been elevated since November. In November it was 96, then 92. In December it was 94, along with elevated c-reactive protein. In March it was 80. Anyone else have an elevated sed rate for months? How much elevated? Normal is below 20 for my daughter's age.
Sed rate is an acute phase reactant parameter in blood work. Quite non specific without CRP, Ferritin, CCP and a few other acute phase variables also being checked.
It can be elevated in children with Lyme and Co who go into autoimmune phase, show up with positive SLE markers. What also can happen is some children go into Auto-inflammatory phase and end up with high sed rates, high CCP etc. One thing thats coming up more in children is CRMO- chronic relapsing multifocal osteomyelitis. DS10 is one example of that and have three more in my practice. So depends on the symptoms.
Since 2009, DS has had off and on relapsing difficulty walking, leg aches, pains, hip pain, the MRI shows up as bone marrow edema- another nonspecific marker, CCP is 42, ESR is 54. We had the ESR down to 15 last year and were in remission with the CRMO for a year until last summer he had a sudden relapse.
When training with Dr J in CT, he told me about a little boy from Italy he sees with severe CRMO at 12 sites on his body. The boy recovered after 2 years.
Dr Kling who also sees DS, told us its heavy metals corrupting the bone marrow, causing inflammation and the elevated sed rate- so we're working on that.
So depends on the symptoms.
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Not sure I understand the thinking that pulsing will drive the infection deeper in pediatrics but not adults. DS had already been on single abx for Pandas for 2+ yrs, unsuccessful IVIG. Not sure how anything could drive things much deeper after all that. He's been on combo abx, incl. 5 wkends of tindamax, over the past 18 months. I'm feeling like we've gotten most of it but want to try pulsing just to make sure. LLMD started using pulsing last summer after adopting a number of patients from another LLMD who closed his practice and they were all on pulsing, so he continued and has been impressed with the effectiveness. He didn't specify if it was adults only but we have spoken about it terms of my 9 yo. using combo abx for 3 wks, then off of all abx for 3 weeks...
I have heard that from another mom on the west coast but there the LLMD used it as part of regular pediatric lyme abx schedule.
Confused by this. How can it be a regular abx schedule but also pulsing? I don't think I'm following you.
I mean the LLMD uses it for all children and adults as his routine protocol not just for the severe ones like some do.
Very different physiology and toxicity levels in adults and children. In adults its already in deeper in today's world plus if not, adult cell membranes can tolerate repeated permeability adjustments much better than pediatric tissues can. Adult detox pathways can also handle changing influx of chemicals better than compromised pediatric detox channels can. In gestational lyme the mom might be holding on pretty well but the affected child has to deal with her downloaded toxins and their own acquired ones. Its very different dealing with a child's patho physiology in chronic degenerative disease.
Adults have much higher levels of epigenetic and environmental exposure, years of toxins, bad food choices, stress, life style issues, misdiagnosis etc- long list. Most I see have been travelling the MS and CFS route for years and finally stumble upon lyme. In children its preventable if caught early enough and treated from all angles. What I've learned is pulsing teaches the microbes to change forms faster and burrow in deeper to resist. The surface proteins change faster and there is a higher risk of increasing already existing autoimmunity or inducing autoimmunity thru molecular mimicry of these changing surface proteins. One of the emerging theories of IVIG resistance in some kids. IVIG shuts down the adaptive immunity naturally since the body senses an influx of donor antibodies. The innate system will never accept donors as self easily. The adaptive is shut down. The microbes panic at the new arsenal and defend themselves by rapidly changing form and/or surface proteins causing a major stirring up of stuff, increase in molecular mimicry scenarios for several weeks. This is for lyme and PANDAS kids or Lyme only that are getting IVIG to build up their immune systems they have been told by their docs. Many I see are doing very poorly after IVIGs every 8 weeks.
Herbally and allopathically treating as many coinfections together as possible is the key and ofcourse as you already know, in the right order of elimination. Steady dosing creates a sustained blood level of the desired herbs/abx and is gentler on pediatric tissues.
Again, my experience and learning.
This has been my learning and experience so far. Always happy to learn more.
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- their immune system steps out of the way..... and their little bodies accumulate these additional toxins. This is the genetic plus epigenetic issues we see in our kids with gestational Lyme and post lyme acquired PANs. PANS in my DS's case and many cases gets recognized first due to its dramatic onset and progress.
So it's not just the " faulty" genes they are born with but what these " faulty" genes cause in the process that is a problem?
yes, exactly. from what Ive learned and experienced, each child can have different triggers. For my DS it was the DTaP vaccine for example. Epigenetics, environmental influences are also big players in the game. Additionally, microbial exo and endo toxins are capable of turning genes on and off at their most virulent and can attach themselves to ones DNA. Energetic testing detects a change in the individuals signature oscillations. Any genetic psychological traumas, unresolved familial conflicts seem to play a very key role. Once autoimmunity creeps in then emotional rebalancing is the most powerful tool in my arsenal for my patients as a midpoint of their treatment.
At this level of intracellular toxicity, I would do a homeopathic Sarcode challenge during ART to see if the cells resonate at any healthy frequencies. Custom remedies can be created for children who are severe by imprinting these defective frequencies onto the remedies they test for during ART.
I had to do so for my DS. I had to imprint his toxic frequencies arising from intracellular embedded thimerosol from DTaP and amalgam mercury (from my amalgams) onto his remedies I was using for helping the Basal ganglia in his brain recover from PANDAS. That achieved excellent results for DS and finally ended our PANDAS struggles. I did test to make sure that his BBB was closed with all the prior treatments before starting to heal the basal ganglia.
I had thought I might have to use GcMAF but I didn't have to. Its still sitting in my freezer. I will use it for myself when Im ready instead.
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Fixit - you need to take the washing machine apart to look for mold. If it's a top loader, go to youtube and search for a video to see how to take apart your brand. Usually, there are 2 screws that attach the outer body cover to the electrical panel and knobs. Take off the body cover and you'll see the metal drum set inside a larger plastic drum. The mold on my machine was covering the plastic drum.
If you have a front loader, the mold problem is generally at the seal of the door. I understand it's harder to access for a good cleaning but you can use a cleaner specifically made to clean the drum and fight mold.
Jodie - re: pulsing of abx - my LLMD has been using pulsing with great success. 3 weeks on/3 off. He says the initial 2 cycles are rough, but patients see big results after a few go-rounds.
Can you tell me what you mean by great results with pediatric pulsing? I have heard that from another mom on the west coast but there the LLMD used it as part of regular pediatric lyme abx schedule.
Both of my mentors- conventional LLMD and Holistic LLMD are strongly against pediatric pulsing of herbal and allopathic abx for the same reasons even before they actually met each other. I particularly explored this option since I wanted to try it with DS at a low time and I was training with the Holistic doc.
I would like to have that explanation in my arsenal. You never know which child might respond.
Adult pulsing is well documented in the Lyme circles and I've used it very successfully. The 3 weeks on and 3 off etc is very similar to Burrascano's self protocol and its been used with variations ever since but only with adults that I know of.
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Just a few thoughts based on what I see in my practice. This is what I have learned and have experience with so far.
Start and stop of abx will only result in driving the chronic infections deeper. This goes for herbal antimicrobials too. One needs to find the abx combo that works and stay on it.
band 39 positive etc- Lyme is positive. Most kids also have coinfections. Bartonella is a common coinfection and its very immune suppressive and needs to addressed aggressively if any treatment is going to be effective.
Any chronic infection changes the internal environment in the body- bacterials toxins, allergies are environmental toxins. Your DAN must've given you info on this. There should be no hesitation in treating the Leaky Gut.If the brain is affected, one needs to start with the gut. 70% of immune system lives in the gut. The neurotransmitters are manufactured in the gut. detox happens in the gut etc etc
Detox and drainage, organ and nutrition support.
Neurons communicate electronically, electricity plus biochemical processes create electro magnetic fields that are protective of the cells. EMFs play a huge role in motor tics in children in my practice and once those are addressed it helps calm down the motor tics by upto 25% or more in most kids.EMFs disrupt the neuronal processes.
I see a lot of conventional meds on your list- all great meds and very effective. I see a lot of autoimmunity with allergies and PANDAS. Autoimmunity is late stage of late stage chronic degenerative infection. The body needs a ton of additional support. I don't see adequate support. Maybe you didn't get a chance to post your entire protocol.
IVIG is a mixed bag and much debated. Ultimately a personal decision.
Mold and insulin resistance in the brain needs to be ruled out.
Bradstreet is a colleague and brilliant.
All in all a good integrative med doc who understand Lyme, PANDAS and integrative would be my suggestion. ALL symptoms that you mention are fixable in children so young. I currently have tens of cases with similar stories all doing very well indeed. Childrens bodies will heal well if given the right tools.
Nanocurcumanoids from Life Enhancement is the most potent Curcumin on the market I 've seen. Garlic has limited use in protecting the BBB. Curcumin helps with intracellular mitochondrial dysfunction and energy metabolism of the cells in the brain. It can help the neurons communicate better, reduce insulin resistance and help in that way.
EFAs are a big help too. But assuming using Garlic and Curcumin protect the BBB is a bit presumptuous in my opinion.
As you can see there are a lot of unexplored areas in your protocols and there is a lot of room to tweak. Please don't lose hope. There is so much you can do. Cost factor is always huge for most of us unfortunately.
I have mentioned in more detail in another post but my DS 10 with Aspergers, Lyme, bartonella, Babesia M, Babesia D,, Mycoplasma p., PANDAS, Immune deficiency,HHV6, RMSF, autoimmune osteomyelitis, severe full body shakes motor tics, vocal tics, allergies, - is now at 98 to 100% after two years of aggressive treatment under my care and guided by my mentors. I have all of the above infections and a few more and am doing well as is DH.
It can be done.You sound like a strong and amazing mom who is looking hard for answers.You will find them by God's grace. The mothers on this forum are absolute mother warriors and you will find fantastic knowledge and support like I have. Wishing you the best.
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Hi, I am at low point and need help understanding the differences of a child infected by a tick bite and one " born" with lyme. are there differences???
This is what I've learned from my mentors and my own study-
Kids with Gestational Lyme are born with immune system errors. Their bodies donot recognize Lyme, coinfections and anything else transferred thru mom as foreign. As a result the endotoxins /biotoxins produced by these microbes which also contain the signature oscillations (DNA) of the microbes themselves is also not recognized as foreign.Breastfeeding /nursing is also a similar mechanism of transfer of material. Now what happens is when these kids come in contact with other toxins- strep, pesticides, oxalates etc that are very similar in molecular structure to the microbes already welcome in their bodies, --- their immune system steps out of the way..... and their little bodies accumulate these additional toxins. This is the genetic plus epigenetic issues we see in our kids with gestational Lyme and post lyme acquired PANs. PANS in my DS's case and many cases gets recognized first due to its dramatic onset and progress.
On top of that gestational Lyme and Co kids can have several genetic polymorphisms or defects for Liver and other detox pathways. This is because if the mom's detox pathways are compromised due to lyme and Co, so will the childs from that half of the genetic material. Many moms pass the infection to dads as an STD (still controversial and being researched). So if dad's detox mechanisms are compromised too then the child is getting a real bad deal.
I have seen this to be true for myself (I have gestational lyme, PANs) and for my DS and my DH. Also for many families in my practice.
Kids without gestational Lyme and a tick bite later on in life , if no other diagnosis is present, they fare better. Kids with existing neuro/psych diagnosis like ASD etc are another story. So it depends on the clinical presentation.
Hope this helps to explain the differences.
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Thanks Suzan. I am happy to hear positive outcomes on kids w/ congenital lyme.
It's a slow and steady race I hear, and I must learn to hunker down for the long haul.
it's hard when your kid is so sick and you're desperate for them to get better fast.
I
I agree but a skilled practitioner will advise and help you to prioritize the symptoms you want to address first along with simultaneously working on opening the healing channels in the body. Believe me the symptoms can be eliminated relatively fast if your practitioner can identify which organ system needs attention first, address that aggressively along with keeping a good overall balance with meds, nutrition and stress management. An integrative approach seems to be the one that has helped many families in my experience. The biggest hindrance in all this is the immense cost factor involved and most of us find we need to go slow and budget things out. I do know of patients for whom cost is not a factor and they have been able to beat this thing in a year or so.
My 10 year old is free of all lyme, PANDAS and Asperger symptoms right now after 2 years of aggressive integrative treatment. he did have congenital/gestational lyme, bartonella, babesia microti, babesia duncani, mycoplasma, HHV6, Strep, PANDAS, immune deficiency and was presenting with Aspergers, slow growth and language delay. ALL of these are gone right now. We are on a maintenance program currently and are looking into heavy metals and a little bit of left over KPU issues. He is testing completely negative via numerous comprehensive blood tests and energetically with ART. Even his seasonal allergies this year are very minimal as his autoimmunity has died down so much.
DS now reacts to exposure to strep, myco etc like any normal kid would, we use abx and we're done. He is growing , has an appetite, is focused, has friends and even spoke to a room full of people at a recent Dr Klinghardt conference in Manhattan about his journey to health, his docs, his procedures. The mothers in the audience were greatly encouraged as many approached us with their personal stories.
I have all of these infections and more. I passed some on to DH too (been married 20 years so he has a pretty heavy load too). We are all doing very well by God's grace and an aggressive integrative approach.
So you don't have to wait to see improvements. If you're able to find a great doc, along with a strong desire to attack the infections aggressively from all angles, you will see some immediate results. The hunkering down is a fact for most of us since complete remission can be a slow process as things have to done in the right order. Eliminate one or two symptoms and then slowly work on building up the immune system, cleaning out the body of numerous exo and endotoxins, reeducate the immune system to understand healthy tissue, and nutritionally nourish the body. Children are miracles of healing and their bodies want to heal if given the right tools in my experience.
Wishing you the VERY best!
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Also, a Dr. suggested in his writing that a certain HLA halotype was also only going to 'get better' on something other than abx. Found this out after the fact but it makes sense since my son never responded to abx.
Can you give me more info on this HLA haplotype? Any link to the doc or the article?
Thanks
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Hi everyone,
My son has really been complaining of upper thigh pain. Any suggestions on what I can use to alleviate his pain other than Motrin?
Any suggestions would be great.
Thank you,
Tami
Thats Bartonella pain and can also be Mycoplasma flare up. If You have added a new abx so it can also be a herx as abx change can stir up things. Need to up drainage. Increase Burbur and Parsley by doing 15 drops three times a day. Give lemon water 2-3 times a day. Fish oil and Flax oil are also helpful for reducing inflammation.
Can you recommend a good fish oil/flax oil for kids? thanks
For children I recommend 2 teaspoons daily of Nordic Naturals fish oil. Comes in many flavors. is liquid. For Capsules the best is Salmon oil from Biopure and dosage on the bottle is fine. The goal is to give atleast 1000 mgs of the active compounds the DHA, EFA.
Flax oil I recommend Barleans Organic flax oil. Don't go for the highest lignans. Average is fine. One tablespoon once a day is good.
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Hi everyone,
My son has really been complaining of upper thigh pain. Any suggestions on what I can use to alleviate his pain other than Motrin?
Any suggestions would be great.
Thank you,
Tami
Thats Bartonella pain and can also be Mycoplasma flare up. If You have added a new abx so it can also be a herx as abx change can stir up things. Need to up drainage. Increase Burbur and Parsley by doing 15 drops three times a day. Give lemon water 2-3 times a day. Fish oil and Flax oil are also helpful for reducing inflammation.
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Great posts - very informative. Thank you all.
sptcmom - Can you tell us a bit more about the Biotic 880 Biophoton therapy?
Julia here is an informative thread from Lymenet that will answer all your questions on Bionic I think
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/108232?#000000
There is a US version called as PE1 and upon research, talking to people using it, professionals too,I wasnt very impressed with that other than it being cheaper. German Technology is original, and far more advanced than PE1. Ive been to Germany for training and treatment and have a first hand knowledge of how things are done, the research thats gone into the Bionic prototype and the current version. I couldnt settle for the cheaper version for my family or patients.
happy to answer any other questions you may have.
I know many well known patients and lesser known who have successfully transitioned off abx after treatment with the Bionic. My goal is to do the same for children and my own son.I am seeing a lot of abx resistance building in children who've been on abx for 2 or more years and The Bionic is def going to make a difference.
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So I'm a bit confused - it sounds like you've gotten rid of a lot of viral issues and you haven't tested for Bart. I mentioned the methylation stuff assuming that fatigue was a major issue, as it is for us. But doesn't sound like that's the case.
I'm not sure I understand why you feel you only have two expensive options left. Sounds like the artemisinin is doing something. Why not test for/treat Bart? What are the issues you feel you can't conquer without Valcyte or GcMAF?
Are staph and parasite/worms viral? Had not thought they were but if so, then yes he does appear to have gotten rid of those per ART testing. Have not done any additional testing to see if they are there still or not.
As far as I know, son has not tested for Bart per ART testing. We have not done any of the official lyme tests (beyond the western blot) to see for sure what he has.
Just figured out that he has been on Artemisinin for a total (had to stop when T&A done) of 4 months now. He still reacts with a flare (more flu-like symptoms then he usually has) when we get up to 400 mg. He is taking 200 mg a day every day and we pulse the 400 mg 2 days a week. Not sure if we have exhausted this approach? He also take Valtrex (1000 mg) a day, and Viressence (maybe Quintessense?), and who knows what else in his supplements. Not sure if any other ones are anti-viral.
Doctor is saying that the viruses are just not going away and has given us these 2 choices to look at. She has already written a prescrip. for Valcyte. Son's issues are continuing muscle aches, headaches, nausea, headaches, lack of concentration/memory. These apparently vary in intensity depending on whether he is flaring up or not.
Thanks for your input, I really appreciate it.
Not sure who this is meant for but wanted to chime in
your son's symptoms are typical of Bart. Artimisin is more for bab and inflammation. Antiviral is a minor effect.
Viressence is pretty good for viruses. garlic too. Quintessence is for Bart mostly.
All of the above need to be liposomal to be max effective.
Artimisin needs grapefruit juice to be better absorbed.
Grapefruit juice is to be done two hours away from Mepron.
GcMAF is not the only option. seems to be the fastest option in theory. As I said there are alternatives coming soon.
I havent found any pediatric GcMaf convincing success stories other than for kids with Autism. its a different issue there.
Intestinal parasites and biofilm will shield viruses and smaller bacteria so yes if one ART tests for parasites it could mean viral load. yeast can bind to heavy metals so both often test together with ART.
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Also hope to train for Regenerative Cryosurgery in the next year or so. This is a fantastic alternative to regular T&A but only offered in Germany. I have been already approved for the training and would love to bring it to the States and my patients but need to have Ds fully settled before such a venture.
GCmaf update- have it waiting and ready in my freezer, have a very gentle pediatric protocol too for DS BUT need to wait till Vit D3 is atleast 40. So we're waiting.
(partial quote from above)
Do you know if there is a test--blood test or energy test or any kind of test--to indicate whether the regen cryosurgery would be helpful? Is there something specific that is looked for symptomwise to indicate it would be helpful, or a particular result looked for or reason to do it? I've heard it can be very useful but don't know much on the why and how we know kind of stuff.
The GcMAF really gobbles up the vitamin D, mine went from 132 down to 40-something in a period of a little over a month of this therapy plus a couple weeks without it.
Michael
Dietrich and I both tested DS for regen Cryo indirectly with ARt. Upon both two pointing and prioritizing, the focus was the tonsils for Ds. Dietrich suggested t&A or cryo is best if I was up for it, my choice. I researched and chose Cryo. I also spoke with other Dietrich's patients and got some more info.
A phone consult with the doc in Germany taught us that the mom needs to be examined and treated and dad too to be totally covered. DS got the t&A done, DH and I got T&A and sinus cryosurgery too. Sinuses are contraindicated for kids.
I wanted to preserve the MALT immunity for DS. Since PANDAS is a huge issue for him and has had Vitiligo in the past and autoimmune in family history, I felt getting rid of any immune tissue cannot be good. So decided to preserve and clean out the tonsils instead.
DS was TOTALLY asymptomatic for 38 days post cryo until he contracted Myco P. in school.I am still feeling fantastic and DH is totally off abx and on only herbals. I am using Bionic for Ds and myself and hope to be off abx soon too. As an added bonus DH's trumpet like snoring is a thing of the past! whew!
The entire viral load disappeared for all 3 of us. DS's ASO went back to normal and Dnase too.
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Julia, sorry to sidetrack- you said you supplemented glutamine- dd and I both tested for a heavy need of it- I bought some, gave her one, she had a horrible flair/reaction-horrible.
made me think of all the glutamate threads we have seen and how too much glutamate is an issue, and seeing improvement with glutamate blockers.
I'm confused why we are showing a 'need' for it, and will never supp glutamine ever again.
I am/have been on bio-med boards for children on the spectrum-
some do viral protocols with naturals, using up to 3 different things at once
(OLE, virastop, Eldaberry, Enhansa curcumin, etc.)
to try and 'pull them out.'
Some will do the Valtrex or Famvir type prescription, but state it is necessary to use full dose- if not, it will allow the viruses to grow stronger, need full dosing to adequately surpress,
and watch out for yeast. And that addressing the virals like this can also pull metals.
I have also read threads of some parents using the GMF (sp.?) shots-
as the immune system wakes up, it can start killing off, some flairs.
Some are having mixed results-
Cannot remember if you are using ART testing? I have every supplement that is not from dr. dispensary ART tested before using it on my son to make sure it is pure. Do not need any add'l metals, bacteria etc. after working so hard at clearing them out.
Also, if you are doing ART testing, from what I have read, many things can disrupt their ability to diagnose well, i.e., fatigue, illness etc. Son's dr. has another person 'assisting' with the testing if it is the first visit, she is not well, etc. There are also different levels of experience (levels 1-4).
Interesting comment on the dosage for Valtrex. Son is take 1/2 tab 2xday at 500 mg each. Will check dosing.
Detoxing has been going on for over a year and hair testing has shown more metals etc. coming out thru the hair which is a good sign son is getting rid of them. Son only tested 'needed' for glutamine for ~4 months. What are glutamate blockers?
Are you referring to the GcMAF shots? If so, that is one of our choices right now. Have been following BetterHealthGuy.com blog on his experience. At $900/month for at least a few months of treatment (and maybe more) it is rather expensive. A bit invasive with blood from other people too.
Thank you for your input.
As you all know I am an ART advanced practitioner. There is level-3 so far, no level four. I know Dr K is planning it but no training/certification for the same so far.
I do use Pleo Sanum remedies. As always ART is used to finalize the remedies.
Pleomorphic therapy considers Viruses to be very opportunistic infections mostly due to internal milieu disturbances. So nutritional and organ support using ART for prioritizing is very important to see pood results. Pleo-Sanum uses protocols and is done chronologically. Its not a single remedy fix all approach.
Metals and viruses are not directly related in my experience so far. Metal detox is a good idea in general when treating TBIs.
GCMAF- Better health guy (S.F.) is a friend. He has tried GcMaf under the guidance of Dietrich K and Bradstreet. After being 90% better he had a heavy return of inflammation after starting with a low dose of gcmaf. he is not really seeing any clinical improvements. I have heard the same from several other adult patients. So just reducing Nagalase (which is known be a toxic byproduct of viral infections and cancer cellular metabolism blocking Vit D3 receptors etc) is not always leading to a clinical improvement.
DS's test results for DNA, RNA nuclear oxidative damage, urine porphyrins just came back from Laboratoire Phillippe in France and Nagalase too.
Ds's nagalase is 1.0 (ref range 0.35 to 0.95), vit D is 36, he has average oxidative damage in his cells and his cellular immunity is accurately activated.ANd there is NO, repeat NO bloodbrainbarrier (BBB) inflammatory response as per immuno staining test! YAY! PANDAS has finally taken a bow out and I hope to keep it that way. This is really measuring the actual brain endothetial cells response not just a clinical lack of PANDAS symptoms. I can't expect to erase B cell memory so soon but hopefully that will happen too.
There is no real test to measure that. BIONIC 880 is a great tool for immune modulation and I hope to achieve the B and T cell responses I need. I use/ create individual patient AUTONOSODES in my clinic along with the regular Lyme BB and Co nosodes.
DS's white cell count is the HIGHEST since 2009!
He rides over a cold or any other virus normally
he is now mounting a fever after 6 years of not being able to,
Recent Mycoplasma infection went to high IgM response, going down now and IgG beginning to rise- NORMAL immune response after all these years! The same infection in 2008 went directly to IgG, poor kid and we never addressed it until Dr T, the brilliant Dr T figured it out.
Raw goat's milk has helped to eliminate the need for enzymes and betaine HCL as supplements.
Dr Klinghardt has come up with a Homeopathic GcMaf only available in Europe so far.
The GcMaf probiotic Yogurt is available in the USA now Scott tells me.
Do keep in mind that betterhealthguy has been thru phenomenal therapy including regenerative cryotherapy for T&A , Stem cells, Bionic 880 Biophoton therapy. These are all very potent treatments.
My experience
DS , DH and I just had the T&A using regenerative cryotherapy in November. We all experienced a very dramatic shift in our healing pattern. We are now responding faster to treatment and the herxing is 2 to 4 days if any with any change.
We started the Bionic 880 biophoton therapy early January. The results have been extraordinary- each day seems brighter, depression is gone, energy is great, higher titers for Bartonella in bloodwork, Lyme is finally clearly exposed, higher RMSF titers, NO immune complexes, NO viruses anymore- I believe we are now seeing a true picture- for Ds. havent been able to bloodtest DH and I yet.
Microorganisms are fully exposed for Ds after biophoton light therapy. DS sees Dr Jones and Dr Klinghardt in addition to me. I am trying VERY hard to have my website up and running so I can write about DS's journey. DH is the web architect but as been thru treatment finally after months of denial. So Im not pushing too much.
I now offer Bionic 880 light therapy in my clinic. Travel to Germany to see a trained practitioner is no longer required. I finalized a pediatric protocol for the Bionic 880 in December along with other support therapies like Biofeedback, Cold laser detox etc. I am seeing fantastic results in my family and my patients. A sense of well being is great to have back after all these years feeling icky.
Hopefully will present at the next ILADs if I can get my act together and write the darn paper!LOL.
Also hope to train for Regenerative Cryosurgery in the next year or so. This is a fantastic alternative to regular T&A but only offered in Germany. I have been already approved for the training and would love to bring it to the States and my patients but need to have Ds fully settled before such a venture.
My nagalase came back too and it is 1.30
GCmaf update- have it waiting and ready in my freezer, have a very gentle pediatric protocol too for DS BUT need to wait till Vit D3 is atleast 40. So we're waiting.
Having dinner with betterhealthguy, Dr J and Dr Bradstreet next month, seeing Dietrich K in April so will keep you guys updated with what I learn as always.
The sequel to under our skin maybe previewed at the Spring ILADS gala in NYC is what I hear from the producer. For those attending you see yours truly featured. The movie is still in the editing stage but the preview is ready.DS is being interveiwed next week and he will talk about his experiences with LYme, PANDAS, his docs etc. Will be helpful for children. They are covering pediatric lyme, gestational lyme, integrative/Holistic medicine practitioners and the latest treatments in the sequel.
These have been my experience so far.
He is doing fine. Cannot even see scratches on his face after 6 days and just got a small cast today. He saw his ND yesterday and got a bunch of injections on his head which were not pleasant but are supposed to help keep scar tissue to a minimum. 
This is one brave 14 yr. old! Helmet was possibly a life-saver!
Feeling very frustrated, Dr. J appointment seemed for nothing..
in PANS / PANDAS (Lyme included)
Posted · Edited by sptcmom
Oh dear. Well, there are hundreds of species of Mycoplasma which are slowly being discovered. Many do have Flagellin. Have trained with Dr Fry, Dr. Klinghardt and Dr T and learned this. I spoke at the 2012 ILADS and Dr Fry was there as well and he spoke about Band 41 and implications with many ILADS docs including myself. FL1953 has been named and discovered. It was first called haembartonella, BLO then FL1953. Now Fry labs is talking about BabLO too. Its all the latest research in progress. Ive been using this knowlegde to help many many patients with great results and just wanted to share for those who want all information out there. Dr Klinghardt recently spoke at a conference and said the FL1953 maybe the most significant infection in some patients which has to treated first he's finding more and more in his practice.
Anyways like I said for those parents who do wish to have all the latest info out there the five star docs are using to help their patients. I have been uniquely fortunate enough to train with them and see them in action. Amazing and scary at the same time. Thats where ART comes in and helps move the treatment forward when lab tests are confusing. But ART is not for this topic.
Good luck.