sf_mom

Interesting interview and thanks for posting. I am not sure what to make of it. It might be worth trying to unplug, use tinfoil and see if we get similar results. We are definitely seeing accumulative improvement. The change was instant for us. Or example, my husband had a running injury and was unable to run for the past six months. After two weeks of grounding up to his injury he was able to run again. Our younger son who was getting up two or three times a night for over two years is also sleeping through the night and for longer periods of time. I too am seeing really odd improvements.... like a little area of Rosacea on one of my legs resolved (connecting grounding pad up to it) and my chronic sinus issue has resolved. Maybe we don't have that much ground current here in our area? Another interesting thing in the interview is when using a grounding mat and doing ART the energy goes slack. I would be curious for you to try tinfoil first and see if it helps independently of 'officially' grounding. By the way.... We are switching older DS to an all herbal protocol. I will eventually update if we are successful in making the transition. He currently only ARTs for fungus/yeast, chemicals, pesticides.

Happy Holidays! I've been reflecting a lot on 2014 as the holiday season approaches. In brief, older DS had a sudden on-set at 5 1/2 years old. Three weeks after MMR, strep related illness and virus our DS woke up a different child on June 27th. We treated him for PANDAS for 1 1/2 years with good success (inclusive of 3 HD IVIGs) but never achieved full remission of symptoms. At the 1 1/2 year mark he had blood in his stool for over 8 weeks and started looking beyond strep for the cause of his PANS and found many things. Our son had Lyme, Bartonella, Babesia, EBV, Coxsackies, methylation issues, vitamin/mineral deficiencies, mold and heavy metals, etc. It truly felt like he was positive for everything!!!! Later we found our younger boy/girl twins and myself had all the same infections and issues. We've been on this PANS/PANDAS journey for a long time. Older DS is now 10 1/2 years old and maintains a high level of recovery with no notable PANS symptoms. In the past year we've really tried some unique therapies in hopes we could put Lyme behind us completely. Some of these therapies included: Ozone, HBOT, TMS, Mold Detoxification, HD Vitamin C and IV nutrients, etc. Hence, I wanted to share one of the most cost effective and beneficial therapies that we've tried in the last year in hopes it might help someone else. It is called earthing or grounding. We started grounding all of our children every night while they sleep. I won't go into detail on the science but to summarize it helps tremendously with inflammation, sleep, EMF exposure.......... plus many other things. Here is a good starter kit which includes a book for $19.99 http://www.earthing.com/product_p/sobbk.htm I would recommend purchasing a sheet or pillowcase eventually if beneficial to your child. Grounding can cause a herx so the bands are perfect to start. A starter kit was given to me from a "Lyme" friend. Anyway, I've been around this board for a while so this is not a sales pitch... just great inexpensive results for our entire family. I suspect it was the EMF mitigation - neutralization that was so helpful to our kids. Wishing you all recovery in 2015!

I am wondering if the rages were occurring prior to steroids? The worsening with steroids can "sometimes indicate" there is a chronic infection that is not being addressed properly. When you suppress the immune response "sometimes" these infections get a leg up. Additionally, clindamycin is an antibiotic that can really pack a punch because it cross treats...... hence an intense herx that might result in rages. My children have bartonella and when we treated it aggressively their herx's were rages. Rages are predominate symptom of Bartonella for us. Have you checked for TBI co-infections?

If you read "Cure Unknown" closely, in the early 80's Dr. Jones in CT noticed many children being treated for Lyme also had OCD and it resolved with treatment. This was well before PANDAS or PANS was understood. In the early 1900s Dr. Henry Cotton believed mental illness was the result of untreated chronic infections. http://en.wikipedia.org/wiki/Henry_Cotton_(doctor) I believe Freud's theories and other similar theories were a tragedy to mental health..... those theories essentially disconnected mental illness from physical illness. The pendulum is now swinging back the other way and mental illness is being considered as a physical illness thanks to PANS and PANDAS. Bottom line: more research is needed. I too have a difficult time with the notion of pure auto-immunity and dare I say genetics (our children are not fully biologically related and have the same illness). For now, we surely don't have all the answer so we are only left with whatever method of treatment that works for your child and our shared experiences.

We are not treating KPU as they are not technically pyrrolic. However, they do have imbalances with zinc and copper...... copper was extremely high in the twins and symptoms were reflective of that. We were supplementing as high as 150 mg of zinc per day with a 8(zinc) to 1(copper) ratio. Zinc levels were still borderline deficient with higher copper (SpectraCell) after 9 months of treating at those levels. I was told by one of their Dr.'s directing the zinc amounts that when copper does not fall to proper levels and ratios are still off or the zinc remains borderline or deficient this typically indicates heavy metals issues..... which we have. We are now supplementing with 90 mg of zinc and no copper. Hair sample show high levels of both zinc/copper but SpectraCell shows low levels of zinc higher copper. Copper has come down some with zinc supplementation. So, they are incorrectly utilizing zinc but again are not technically KPU/pyrrolic.... These ratios should rectify once we address heavy metals further. This time we will either do IV Chelation or PK protocol to address metals. I've always found this article helpful and why I am reposting. It took me several reads to fully understand. http://www.tvernonlac.com/copper-toxicity.html

With SpectraCell we treat anything that is borderline or deficient result. When things settle and you figure out Glutatione issue I would supplement with 30 mg zinc daily. In six to nine months consider retesting SpectraCell and if zinc glutatione levels have not budged definitely consider heavy metals/mold/yeast as an issue. My children also had similar 'very low Glutatione' levels..... With no absorption. We actually nebulize Glutatione as a result.

How were her zinc/copper ratios on SpectraCell results. Typically, if copper is higher and zinc is borderline or low that would also indicate heavy metals issue. Copper levels tend to stay high when metals are involved.

Of course, it could be a virus or bacterial infection triggering latest symptoms as well.

Glutatione can cause a herx as it activates the immune response. Some kids have a really difficult time with it. I have had periods where IV glutatione makes me feel amazing and periods where IV glutatione makes me feel horrible. I think my response depends on how my body is dumping. I have horrible genetic markers for methylation. With levels that low I would be checking for yeast, mold, heavy metals, absorption. Yeast and ability to absorb vitamins/minerals go hand in hand. Comprehensive stool is the best test to determine both. Mold (I think you checked or are checking). For heavy metals I would do an IV challenge of DMSA or EDTA.

I wanted to add that our children's red blood cell count was typically low end of normal or low. Hemocrits were often low.

I just wanted to agree with everything Rowingmom is telling you! Plus add that there are 11 known strains of Babesia and Igenex only tests for two: Microti and Duncani. Bartonella similarly has cousin strains that are not regularly tested like Brucellosis. See notes from 2014 ILADS conference. http://www.betterhealthguy.com/ilads-2014 Our younger son tests positive for Babesia Duncani. He has gestational Lyme et al. I had every known symptom for Babesia but have never tested positive and improve with Babesia treatments minus the Herx. Depression is a noted symptom of Babesia but there are other specific symptoms of the following: Headaches in the back base of head (for me they typically occurred later in day) Shoulder aches making it hard to hold up head Thigh pain - bone pain Eye pain Night sweats, nightmares, sometimes frequent waking (these symptoms were predominate in our children) Air Hunger - Breathlessness Temperature intolerance: hot to cold Isolated little pinpoint red rash (like stuck with a pin) when pressed on they get redder - sometimes they itch - hard to resolve Here is one of the better symptom list I have seen. http://www.wayneanderson.com/pages/diseases/babesia.html

I have a talked with a few individuals over the years who's children had PEX and then later found Lyme. For some, it helped and for others there was a neutral response (didn't hurt but didn't help). I have not heard of anyone worse long term from PEX that later found Lyme et al. One area where I 'imagine' PEX could really help is if there are biofilm's in the blood or the co-infection of Babesia (Red blood cell parasite). I have even heard PEX being used for acute cases of Babesia along with anti-malarials. Hoping you see some relief for your DD.

I definitely feel for your situation as recovery from TBI/PANS is not easy. Here are some ideas or things to look into if you haven't B-12 and zinc/copper ratios Iron levels B-12 deficiencies can lead to lack of iron hence anemia causing fatigue. It seems like your son is not detoxing, might be under oxidative stress from the treatment protocols or you are missing something (co-infection of 'BLO' babesia like organism, mold, viruses, etc). Vitamin/minerals levels can be checked via hair sample, blood serum or intercellular testing. It is important to know that these vitamins are being utilized by the body. SpectraCell checks the inner white blood cell for utilization of vitamins/minerals/amino acids, etc. You can give tons of supplements however if their gut is all mess up they may not be absorbing or utilizing any of it. When the zinc to copper ratios are off and copper is on the high side it can indicate heavy metals issue. Here is what the SpectraCell test covers. http://www.spectracell.com/patients/patient-micronutrient-testing/ Mold will also cause the fatigue you describe. Often those with an inability to detox biotoxin's (toxin from Lyme die-off) or mold toxin's make very little headway with antibiotic therapies. HLA marker will provide you with your son's genetic ability to detox these toxin's. Shoemaker Panel will help to confirm if its mold. AND of course viruses present real problems with fatigue. For us, HD IV C has been extremely helpful in treating viral load and mitigating fatigue.

Interesting comments on PANS/PANDAS and Bartonella.

As you know C4A's are related to inflammation. Minimally, if you are not taking some type of natural anti-inflammatory I would start. We take Enhansa and Maxi Flavone for inflammation. Typically any C4A above 10,000 is indicative of mold but a lower number doesn't rule out mold. All our kid's C4A's were around 1,000 (completely normal) and they all had a mold issue. We did not investigate mold too seriously because of the C4A results and that was a huge mistake. Our DD had the highest levels of mold toxin's our LLMD had ever seen. After a years worth of Cholestyramine for older DS his Real Time Lab results are near normal. He too tested really high for Tricothecenes. I would test: HLA Marker's: Genetic ability to detox mold 'toxins' and biotoxins. Biotoxin's are toxin's from bacteria, etc. Shoemaker Panel: Includes C4A and is a collection of tests that indicates mold. The VEGF test associated with panel can help determine if you are dealing with Bartonella. There is a normal range of results and number is typically low when you are dealing with Lyme. However, if the VEGF results is abnormally high it can indicate Bartonella is a predominate issue. You might google Bartonella and VEGF.... If I remember correctly it is any result above 200 that indicative of Bartonella as co-infection. http://www.survivingmold.com/diagnosis/lab-tests Real Time Labs Myotoxin Urine Test: This is an expensive test but follow-up testing is under $200.00. You may only get a positive reading if your body is dumping toxin's at that moment in time. Remember some people have difficulty dumping these toxin's and why some might come up negative on result. It is the 'collection' of tests that is critical in determining mold http://www.realtimelab.com/healthcare-mold-and-mycotoxin-information I always tell people to test the individual first prior to your house. Mold doesn't always come from the home. Typically, an environmental mold issue smells 'musty' and can come from schools, etc.

Fever therapies have been used for a very long time to treat infection. http://www.alkalizeforhealth.net/therapeuticbaths.htm Over a year ago when our younger son had the flu with persistent fever our LLMD encourage me to wait it out (with close supervision and a reduction in antibiotics) for this very reason. It took over 5 days for our son's fever to break but he had marked improvement in his Lyme system after that point. Both Lyme and Bartonella have 'difficulties' surviving at temperatures above 102. Lyme dies at a core body temperature of 106.

I do suffer from this type of noise sensitivity and I do not have any notable OCD. For me, it centralizes around individuals talking with food in their mouth or chewing with their mouth open.... Its like I can hear it a mile away. It was more intense during Lyme treatment and typically associated with aggressive treatment protocols. There were times I could not even tolerate my own children talking or eating dinner (much worse when I was tired towards the end of day). I have been 'mostly' off antibiotics for the last year and the noise sensitivity is much better. It now seems to corp up mildly a day or two after heavy metal chelation and sometimes a day or two after a HD Vitamin C (not always). Genetically, I do not detox very well so perhaps its associated with my inability to eliminate toxins.

It could also be parasites. Tomorrow is full moon and 5 days leading up to full moon and 5 days post the full moon is when you might see parasites more active (replicating/mating due to magnetic pull) hence symptoms. You can put a piece of tape over the area at bedtime and remove in the morning to see if there is any visible sign of parasites..... Apparently, hook worms are notorius to cause anal itching and would be visible on tape.

Since you don't know what it is, nothing seems to be working, there is swelling and possible nerve damage have they consider hyperbaric therapy with him 'HBOT'? It might help with all of the above providing him the best possible longterm outcome. She might want to talk with the Dr.'s about this possibility. Here is a reputable center with a list of conditions it can help. There are great centers throughout the US but wanted to provide you with one that I know is widely respected in our area for some perspective. You might also just call them. It can be good for both viruses and bacterial infection. http://www.bayareahyperbarics.com

We used them alongside antibiotic protocols for Lyme et al. Definitely noticed an increase in symptoms along with use that eventually settled. We specifically used the set for Bartonella at the time. I thought it helped but wasn't our complete answer either.

There have been many cases if entrovirus in CA. 5 were handled at Stanford and those children had a respiratory illness just prior to paralisys. In addition to Lyme I would check chlamidyia pneumonia and mycoplasma if they haven't already.

Again, the VCS on-line test might also help you determine biotoxin issue.

He really needs to have something on board to help him detox the mold toxins. The Real Time Labs covers completely different molds of the following and would still recommend doing both Shoemaker and Real Time Labs. Some Dr.'s believe you need to be off antibiotics to detox mold properly. You might read one of Shoemaker's books for better understanding. Tricothecenes: Black Mold Aflatoxins: Aspergillus Flavus and Aspergillus Parasiticus Ochratoxin A: Mold typically found in food Here is some more information from their website. http://www.realtimelab.com/patients-mold-and-mycotoxin-information/mold-information-mycotoxins#Trichothecenes

Sorry, I can't remember if you've done Shoemaker Panel and Real Time Labs yet? I recently had a conversation with Better Health Guy and he was telling me if there is persistent chronic yeast there is most likely a mold issue. Due to your son's symptom presentation I suspect you've been dealing with a horrible yeast issue for a long time that obviously doesn't resolve with anti-yeast medication. Does he ever have a discolored tongue that is darker, discoloration around teeth, itching? You can also do the VCS on-line testing for $15.00 as a start. http://www.survivingmold.com/store1/online-screening-test You can try ozonated suppositories available on-line at Biopure.

Mold can also impact immune function and prevent you from making headway with Lyme or antibiotic therapies. Have you checked for mold yet? Oops, I think you did Real Time labs already. You should also run Shoemaker Panel as it could be an inability to detox biotoxin which wouldn't show up on Real Time results