sf_mom

It is a urine test. Some Dr.'s use DMSA to challenge.... They provide 4 DMSA pills that are taken after first morning urine and then urine is collected over a 6 to 24 hour period. I did this type of challenge test. Our pediatrician did not do a challenge test with our children and only collected first morning urine. We used Dr.'s Data for the test and it was 'mostly' covered by insurance. Co-pay was still approximately $200.00 if I remember correctly.

Dr. Data. After discovering that the kids all had high lead levels we tested our home drinking water and we had high chlorine, lead was positive, pesticides showed some responsiveness. We order the test kit on-line for $24.00 Even though we were filtering with a Britta, it was not filtering out the heavy metals. We now have a system install that does specifically filter heavy metals. It was only $200.00 and installed at kitchen sink.

I just got back from the Dr.'s and while in the lab getting infusion another patient was discussing how she didn't want to do the IV HD Vit. C today because it makes her herx so intensely. They decided to do IV amino acids instead. Hope that perspective gives you some comfort.

I would also agree you can not rely on out word signs of yeast as we had none other than some periodic hyperness or AD/HD type symptoms in younger DD and dime size eczema patch on DS. They were on Nystatin so I thought we were covered. My kids have been on long term "multiple" antibiotics plus we were doing a ton of detox with them. Its turns out our kids also have heavy metals issue so the combo of antibiotics and pulling of heavy metals made it extremely difficult to get ahead of yeast even with regular dosage of Nystatin. We anticipate the yeast to be a continuing problem as we go through chelation and continued antibiotic treatment. Its one of those things that no matter how you are able to test, its important to monitor if you are on long term antibiotics. If it is unrelenting, like it was in our situation then I'd also be checking for heavy metals.

I was thinking yeast as well. We use a comprehensive stool analysis to check for yeast levels 'Metametrix or Dr. Data'. They actually grow sample and provide remedies to specifically treat. Plus you will get an analysis of good bacteria, digestive enzymes, inflammation, PH balances, any additional bad bacteria. For example my son is dealing with Geotrichum Klabahniii which is a yeast and is responsive to Grapefruit Seed Extract, Nystatin and Oregano in that order. When we started treating aggressively we noticed an increase in hyperactivity flairs, rashes, eczema and fungal outbreaks in the first month.

I've recently started b-12 shots 3 x weekly and IV Glutatione 2 x weekly. Since starting the Glutatione I've been getting flu-like symptoms every 3 to 4 days, body aches, chills and fever. Really stepping up detox is helping tremendously but there also seems to be an intense herx along with it. Thankfully, the flu-like symptoms only last 24 hours each time. I think the IV C can act similarly and cause the body to really start detoxifying. Definitely talk with your Dr. but my guess its toxin dumping/herx.

I did not realize you were in CA. We are fortunate to have a strong network of qualified LLMDs especially in Northern CA. Feel free to PM me via forum if things don't work out with the new Dr. and you are willing to travel north. I would be happy to forward the Dr.'s names up here. Our LLMD definitely has experience treating many children that have OCD presentation and who are congenital.

I know your heartbreak as our entire family is also positive for Lyme et al. However there is hope now that you know 'mostly' with what you are dealing. We've been at this for 3 years, our entire family is greatly improvement and we are reassembling our lives. The road to recovery is rocky and wish I could provide you with one thing that helped over the other but it all mattered inclusive of checking for heavy metals. My only recommendation is to find the best possible integrative LLMD that has expertise on treating every aspect of this illness. Since your DD appears to have been sick for a very long time her body is probably very depleted and loaded up with a lot. Supplementation hence detoxing support could be key to truly helping her body fight the bugs. Dr.'s Data does a decent job looking at vitamin and mineral deficiencies and if you haven't tested for KPU yet I would put that at the top of list. Its a lot to take in initially but you will get there. Wishing you all the best in your families journey to wellness.

Ongoing research in Northern CA indicates Miyamotoi is more prevalent than BB. Unfortunately there is no way to currently test unless blood is sent to a research lab.

I did not realize zinc was tied to testosterone levels when I posted. That is very interesting. Hope you get some answer and direction at your next visit with your Dr.

My older son who is 8 was always worse right before bed and I attributed it to being tired, having low cortisol levels and immune function at that time. Similar to having a cold and being worse at night. When I read your post I was wondering about his hormone levels. Your son is much older and is now dealing with different levels of testosterone throughout the day. Here is a little blurb on peak levels of testosterone throughout the day. Circadian rhythms can have an impact on many bodily functions, and testosterone levels are no exception. Normally, they are highest in the morning, usually at about 8 a.m. A man's testosterone levels then decline throughout the rest of the day, reaching a low point before bedtime--the theory being that he does not need testosterone while he sleeps. The day's events can change this pattern, however. Read more: http://www.livestrong.com/article/302085-how-does-testosterone-vary-during-the-day/#ixzz2J0Yt4zm8 Perhaps checking his testosterone levels would be helpful. As you know, our kids are dealing with a lot and chronic illness can almost alter anything so maybe he is over or underproducing testosterone. Just a guess on my part.

We had a similar experience where younger DS was getting sick every three weeks even this past summer and exposing everyone in household. We started him on Multi Immune Transfer Factor by Researched Nutrionals. He is also taking additional D, Iron, Zinc, C. These are the vitamins and minerals he was specifically deficient. He are now getting much longer breaks between illnesses. Last illness was about six weeks ago. https://www.ResearchedNutritionals.com/store/item.cfm?code=CRN111&cat=3

A good friend with Lyme and PANS son got very sick from strep last May while on multiple antibiotics for Lyme. They too had to rotate specifically to treat. They also tested her son and he had strep in his nose. It took her a long time to fully recover.... I think 6 weeks. It really dragged on her immune system. Her son didn't seem to flair either due to multiple antibiotics and was probably the source for exposure to her. If your DD is positive I would check everyone in the house just to be assured you are not passing it back and forth.

Yes, I was on it for several months but not IV. It was helpful. I stopped it and transitioned to Bacilin shots twice weekly that have been even more helpful. Older son also had bad reaction to rifampin and had to stop. One year later we tried it again with no problems possibly due to fact that overall bacterial load was/is down.

I've read and heard Dr. J talk about kids with gestational Lyme and the symptom he attitudes. We have three children with gestational Lyme and none of our children meet his criteria. They had many other symptoms.... some severe and some mild. Both of our twins had very distinct rashes that appeared as early as one week old and can be seen in almost any photo. One child had aneurysms at 5 months old. Older son had balance issues but was not floppy at birth and developmentally normal until annual vaccinations and strep illness at 5 1/2 years old. We also 'now' have many friends with children that have gestational Lyme and similarly most were not very symptomatic until another illness, vaccination or major injury 'broken arm' that triggered cascade. Some did struggle with things like repeat pneumonia's but eventually could not sustain recovery easily. Both my husband and I are positive for Lyme. DH had very minimal symptoms but still present. We both had exposure growing up and are not sure if one of us gave it to other. However, I had no symptoms until about one year after we started dating. My symptoms worsened with each pregnancy. As a side note, my children are not all fully related to me but were carried in-utero by me. Two are donor egg so the genetics are very different and all three children are sick with some similarities that I believed are possibly due to male verse female.

Linda Dealing with mitochondrial damage is not scary at all... Its just a matter of treating and correcting deficiencies. Researched Nutritionals makes a product called NT Factor which is specifically formulated to address damage that includes: E, NT Factor, MSM, Kreb Cycle Glucose and RN Fatty Acid Metaboilzer. We supplement on top of that with C, D-Ribose, D and additional MSM. I will add treating mitochoncrial damage helps but it was not the full solution to recovery. We really had to treat each additional issue.... viruses, chronic infections, gut issues, etc. The supplementation helps to fight existing issues. Any good integrative Dr. or DAN should understand fully how to treat. In answer to your other post... We absolutely saw an increase in TICS when treating viruses within 48 to 72 hours of treating that eventually settled. Anti-virals will help tremendously but it needs to be addressed long term and along side all issues like chronic infections, vitamin/mineral deficiencies, detox. We 'ALL' want the solution to be easy but in all my experience it wasn't.... it was multiple issues and why we see more than one Dr. You are always welcome to PM me with any questions.

I am not sure how much you know of our history but we have 3 children. Older DS was originally diagnosed with PANDAS and treated with success/improvement for one year. At approximately, one year mark we started testing for additional issues due rectal bleeding and few minor PANDAS symptoms..... This is when we discovered chronic infections of Lyme, Bartonella, Babesia, 3 viruses including 'Coxsackies', etc. Our younger twins who were 2 1/2 at the time had many autism traits but not full blown PANDAS trigger by strep. One twin had OCD and rage behavior and one twin had language regression, etc.. Anyway, we eventually discovered our entire family has Lyme Disease et al and our children were born with it. To make a long story short we work with two LLMDs and biomedical autism specialist..... All our children are being treated for mitochondria damage as well. We tested for it through our Pediatrician as she felt all three children had issues specifically related. I remember her mentioning our older son's tendency to fall over a lot when he was younger and just beginning to walk. It is hard for us to determine if it was the chronic infections since birth that caused the cascade and loading up of viruses/bacterias/metals or a genetic predisposition that caused these issues. The thing that makes me think it is the chronic infection verse predisposition is my children are not fully biologically related to me but were carried in-utero due to the use of donor egg. Our older son is a full biological child while our twins are not. Regardless, all our children are doing well and do not suffer from OCD/TICS and continue on the path of recovery. Its been a 3 1/2 year process for older DS. Today actually marks his last hdIVIG treatment for PANDAS with Dr. K in Chicago three years ago. Our list of supplements is long and most of them are listed in the article you linked. For us moving beyond PANDAS diagnoses was the key to all of our children's wellness. It has been exhausting but often DH and I remind ourselves its been worth it, they have come a long, long way and believe they will be fine. I swear we are done testing but we haven't "fully" investigated the possibility of mold yet. I encourage you to keep investigating these issues for your children.

All three of our children have elevated A and B Coxsackie's titers. We have been treating viruses for the last couple of years with a rotation of herbal anti-viral's and older DS's Coxsackies titers are finally 1:200 and all other viruses are sub negative. We used Virograhphis, Andrographis, A-C by Byron White 'Specifically Formulate for Coxsackie's', Engystol, Olive Leaf Extract 2,000 m.g., to name a few. We rotated the herbals about every 12 weeks. We did notice viral outbreaks and an increase in overall symptoms from die-off/herx response when treating. Overall symptoms increased within 48 to 72 hours with mouth sores appearing between 3 and 6 weeks after starting new anti-viral. Prior to treating we had absolutely no physical or visible sign of chronic virus. One thing I have learned is viruses love to bind to heavy metals like mercury and lead. I would highly recommend testing for heavy metals if you are dealing with high titers and more than one virus. Our children also showed high titers for two more viruses. All of our children have elevated lead and mercury. Heavy metals are easy to collect especially with an immune compromised child and especially if you have mercury fillings or eat a lot of fish. My children have no fillings and rarely eat fish. Our Dr. felt there was an environmental source due to the fact all of them tested similarly so we tested our home drinking water and it came back positive for high chlorine, lead and hint of pesticides. We now have a more extensive filtering system that will address heavy metals as our Britta was not doing the job. These metals can be in bottle water, school water, etc. It only cost $24.00 to test our water and a couple hundred to add filtering system to kitchen sink and showers. However, chelation will take at least another year of treatment but apparently lead is the easiest to draw out. We did heavy metals testing through Dr. DATA Lab and our Dr. Heavy metals will really drag on your body and cause continued issues impacting the gut, depletion in vitamins/minerals and allows yeast to proliferate. Norcalmom just posted extensive information on heavy metals/mercury. It is interesting how mercury binds mostly to sulphur. Our kinds were dealing with Oxidative Stress and made huge advancements when we added larger amounts of natural sulphur to their daily supplement list. It is encouraged to have a sulphur rich diet if you are suffering from heavy metals especially mercury. Anyway, I've probably overwhelmed you..... Two main take aways from our experience: viruses can take for ever to see titers drop and at some point if viral titers are unrelenting check for heavy metals.

Typically 1 to 2 days. However, when "treating" around full moon, you typically treat a week prior and week following.

Like others have said... If treatment has stalled for your son there are a few issues that absolutely get in the way of full recovery that should to be investigated when dealing with chronic infections. It is hard to pick and choose which tests and it all seems important: KPU testing, Zinc/Copper ratios, Mold, Comprehensive Stool Analysis (yeast, parasites, enzymes), biofilm's, etc. Obviously you have unraveled wonky elevated viral numbers.... that seem to be remain consistently high. Our family has been dealing with similar and more than one virus: EBV, HHV6 and several very high strains of Coxsackies. What I have learned is viruses love to bind to heavy metals sooooooooooo since his titers remain high you should consider investigating heavy metal toxicity. We used Doctors Data, its a urine analysis and most of the cost was covered by insurance. With a compromised immune system the body wants to load up and that includes all kinds of stuff like heavy metals. We have had success treating viruses for the past two years and most of our titers are now within normal range however we anticipate viral titers to rise again as we start chelation. I thought I'd include to link to copper toxicity 'I've posted before'. Its very interesting read and explains a lot of cause and effect http://www.tvernonlac.com/copper-toxicity.html

Yes and its a very powerful biofilm enzyme. I definitely think the increase in symptoms is due to Wobenzyme getting at biofilms. When you are treating biofilms it can bring out almost any chronic infection or virus wrapped in biofilm. I would speak with your Dr. about increase in symptoms... Its very possible you he/she will want to make adjustments in protocol based on increase in symptoms.

I might of mentioned this before but I had C-Dif twice at the beginning of my Lyme journey and we continued antibiotics while on antibiotics for C-Dif. If I am remembering correctly it was Vancomycin/Azithro and Xifaxin/Azithro.... there was also a third antibiotic tindamax at one time. It was when we initially added tindamax that really kicked off the C-Dif. Tindamax can really hit biofilms very hard and it is very possible to have biofilms in gut inclusive of yeast bofilms. Have you done a "comprehensive" stool analysis to see how her gut is holding up? Does she have low digestive enzymes, yeast, poor gut bacteria, inflammation in addition to C-Dif? Some of those issues might be preventing her from resolving C-Dif completely especially if there are biofilms. Have you thought of using any herbal anti-microbial's? You might also check for KPU, Zinc/Copper inbalances, Heavy metals as any of these issues can impact the gut tremendously. Just throwing some ideas out there for you to potentially pursue.

It will be interesting to see if her titers are up further. Perhaps its why she could not tolerate Azithro this past fall due to type of infection/herx.

Philamom: If she does not test positive for Mycoplasma.... it could be Chlamydia Pneumonia. A friend of mine who is now diagnosed with Lyme became very ill after a bout of walking pneumonia and has been unable to get out of bed since fall of 2011. After finally getting to the right Dr. they found mycoplasma only slightly positive while Chlamydia was sky high. They believe it was the Chlamydia that kicked off the downward spiral. So, if you are doing blood work I'd do both myco and chlamydia. Both are common co-infections with Lyme.

Clindamycin is a good antibiotic for treating Babesia/lyme and Rifampin is fantastic for Bartonella. I would expect an increase in the symptoms like you describe especially if your kids have these infections. Our younger son also had periodic increase in nastiness/rages that lasted for about 5 weeks when starting rifampin. In absence of high fever we pushed through with rifampin for younger son. Older DS was put on Rifampin 1 1/2 years ago and we suspended treatment due to high fever herx response. This past summer we tried Rifampin again with older DS and he was fine, definite herx but no high fever. He has now been on Rifampin since July. I recommend reading Dr. Schaller's 2009 Update to Babesia treatment to understand how Bartonella can suppress immune response and as a result how often Babesia testing is falsely negative.