sf_mom

$190.00 was before we filed with insurance but similar to LLM, 'I think' our Dr. may have worked out the prepayment price.... just not at $88.00. The test has been super helpful and worth every penny. Our twins were initially High Copper, Low Zinc and had symptoms that resonated with the ratio. After supplementation, they were Low Copper, Borderline Low Zinc...... That is when we upped the Zinc level to a Klinghardt protocol and it helped tremendously. We are in the process of now retesting to see where their zinc levels are and if we can lower dosage. Older DS was initially only deficient in Alpha Lipoic Acid. A year later he was deficient in C, Bs, D, Calcium, Zinc, Magnesium.... all stuff we were supplementing (probably not absorbing anything) so we switch IV nutrients. We also just retested him to see how he is responding to the IV nutrients.

Like SSS, our children are on Biaxin, Cedax (similar to Ceftin) and Alinia. They have rotated protocols over the last 4 years with different antibiotics. None of them have OCD and 2 are close to symptomless however they are not done with treatment. They still have mold and heavy metals issues. I too am being treated for Lyme et al and have been off and on antibiotics over the last year. Unfortunately, every time I chelate for heavy metals via IV I get a secondary infection: gum, bladder, etc and then need to go back on antibiotics. Otherwise, I am fairly close to symptomless myself and live a very full active life. Its been 4 years of treatment for all of us.

We do test via our LLMD. However, I think they have blood draw sites that might not require a Dr. visit but also might be a little more expensive. Just found charge: via our LLMD test is $190.00 http://www.spectracell.com/patients/find-a-drawsite/ Here is a fairly good explanation of their testing: Here is a fairly good over view of their results: http://www.youtube.com/watch?v=28HQ7T6oEU8

Its always nice to have a better understanding of what infections your child may have but now you have to treat. Our experience is its a long road to recovery and there was no one magic treatment protocol. We found a home with integrative LLMDs that look well beyond Lyme for recovery. You might ask around for other references on this forum as there are some very good 'integrative' LLMDs that might even be closer to you than the ones mentioned and could see you sooner.

No opinion on specific zinc brands. We currently use Opti-Zinc by Douglas Laboratories as its recommended by our bio-medical Autism specialist. However, if you want to know zinc/copper ratios and how the body utilizes it inter-cellularly I highly recommend testing through SpectraCell. The test runs under $300 but don't remember exact amount prior to filing with our insurance. We run it every six months now on each of our children. We have treated as high as 150 m.g. of zinc plus 8 to 1 ratio of copper. Our kids were 'still' deficient in zinc at 30 m.g. per day, the twins were not KPU 'pyrrole' either. The higher amounts of zinc 150 m.g. per day resulted in immediate improvements in DD. SpectraCell tests a broad set of vitamin and minerals including Amnio Acids like glutatmine, Antioxidants like glutatione, all B vitamins, etc. For us, this particular test has been invaluable for our children's recovery.

Our DD who had more Lyme induced ASD symptoms than traditional PANS symptoms but developed OCD on two noted occasions. One time when we rotated antibiotics she developed OCD as a die off symptom that resolved fairly quickly - two months (bartonella). Second time was when a tree fell on our house and we had a plume of debris come through that included mold/asbestos/lead. The second time the OCD hung around for at least six months and is trending better and better as we detox her for these environmental toxins. Her speech has improved and regressed with herx's and exposures to new infections/toxin's as well. Slurring, stuttering, inability to pronounce certain words correctly that were previously fine, baby talk, age regression, increase in non-verbal communication. Our kids are not fully related to each other or me (product of donor egg) but were carried in-utero by me. All the kids have had some type of OCD at one point or another and a similar degree of other symptoms. I strongly come from the position that this is predominately a environmental issue and perhaps there is some genetic switching that occurs due to those environmental issues. For example, all the kids have gluten sensitivities and antibodies for Celiac's for us this seems to be more of a mold issue than a genetic issue. Unloading their immune system of 'whatever' issue we uncovered has brought us towards recovery. It has been an extremely slow process. It was way more than just strep.... we truly had it all. We have done many off label treatments that have helped in various ways. We are hopeful for all our kids futures. Keep treating with whatever works for your son. I think the most difficult aspect of treatment has been seeing them herx for extended period of time 'worse before better'. We have learned to truly understand herx's and strategically plan around them.

Always treat the bite. There are potentially more vectors than just ticks for Lyme. For example, flea's are thought to transmit Bartonella. I third SSS.

I mention this often because we had similar food allergies, eliminated specific foods for over 2 years...... the root of our problem wasn't the specific foods but it was an inability to detoxify mold. The antibodies for mold and gluten cross react see below. Quite interestingly, the genes for celiac disease/gluten intolerance have a significant overlap with the mold genotypes (e.g., DQ2 accounts for 90% of individuals diagnosed with traditional celiac disease). Thus, many individuals with a mold illness may be initially diagnosed only as having gluten intolerance, yet they never fully recover on a gluten-free diet alone. Coincidentally, the low amylose diet recommended as part of the treatment protocol is naturally a gluten-free diet. For further information on celiac disease/gluten intolerance and available testing, go here. - See more at: http://www.betterhealthguy.com/topics/mold#sthash.OUyERaZq.dpuf

Rachel: Diluted 35% Food Grade Hydrogen is fantastic for eliminating bacteria on tooth brushes. Bathing in it as well will take care of any topical strep on the body that might be spreading. There is information on-line about its use and dilutions. On another note: Cats are known to carry Toxoplasmosis and Bartonella. I would recommend testing your son for both since you have cates as household pets. It only takes a cat scratching you to transmit these infection 'Cat Scratch Fever'. Both infections can have a huge impact on the immune system and cause PANS symptoms. I would recommend testing through Gallaxy Diagnostics for Bartonella - 3 day blood draw. http://www.galaxydx.com/web/pdfs/hhtestoptions.pdf The rate of Schizophrenia has risen along with the rate of the domestication of cats. Toxoplasmosis is linked with schizophrenia. At some point, it might be important to treat cats and dog/s. Herbs, Diatomaceous earth. http://www.earthworkshealth.com/pets-animals.php

One of our Dr.'s believes skin picking, nail biting, toe nail biting, hair pulling is typically one of three things: Yeast/Mold/Fungus... essentially all the same beast. Parasites Vitamin and mineral deficiency

I do know of several being treated for Lyme et al with a similar problem. Have you tested subclasses lately inclusive of IgA? Have you checked for mold?

I also agree with Hopeny. Go with the treatment that works, if doesn't work keep looking for underlying cause. "It" was so much more than I ever imagined but still very treatable and in "many" ways. SSS: I do know someone locally that is Lyme knowledgeable, will treat with monthly IVIG, fights insurance for coverage and has it set up for in-home monthly services. Our experience is IVIG is/was extremely helpful to our DD. She has had a growth spurt, lost teeth, more consistent in her mood, less aggressive, happier, etc. However, we still needed to treat the underlying infection. After her 4th monthly IVIG her immune system was actually able to fight infection better and it looked like she was regressing. We rotated antibiotics to treat Bartonella more aggressively and she made a complete turn around within 24 hours. For us, the rotation of combination antibiotics along IVIG has been the treatment protocol that is working for her. She is on Biaxin, Cedax (similar to Omnicef), Alinia.

When an individual has a hyper immune response that looks like multiple food allergies especially gluten and/or antibodies for Celiac's they should be tested for mold. Antibodies for gluten and mold cross react with each other. MOLD/YEAST/FUNGUS are the essentially the same beast. The way you test an individual for mold would be the Shoemaker Panel and Real Time Labs Mycotoxin Urine Test. Your DS Yeast issue and allergies makes me think mold issue.

I've heard good things about YouScript. Our LLMD uses it but we have not done it. A couple things I was thinking when I read your post. I would document timing of episodes on calendar to see if you can pick up on pattern. It will help to determine die off cycle. You may be on regular anti-inflammatories but daily Enhansa and Maxi Flavone has helped our family tremendously. We used both for at least a year or longer and now only use Enhansa daily. I am also wondering if you have checked him for Magnesium deficiency. IV Magnesium might help 'CALM' him but not sure if your Dr. provides vitamin/mineral IVs or is close enough to get them on a regular basis. A good way to test for Magnesium deficiencies is SpectraCell as it looks for inner cell utilization of the vitamin/mineral and is not blood serum levels. Other possibility would be to give him CALM in the evenings before bed... at least 2,000 m.g. CALM is not as effective as IV but might still help.

Things that are very helpful for PANS also might help prevent PANS. I would look at issues like vitamin/mineral deficiencies, methylation issues, start her on some type of regular detox, treat everyone in household including pets for parasites every six month (Health Force Scram or Food Grade Diatomaceous Earth), jump on any obvious illness in household and a healthy diet that avoids anything boxed or bagged with lots fermented foods (Paleo like diet that is realistic for kids). When anyone in our home shows signs of an illness we nebulize and bath with Food Grade Hydrogen Peroxide. There is a ton of information on-line on how to treat with hydrogen.

I do believe you can have mycoplasma without Lyme but I would go to great extent to rule out Lyme. Chronic mycoplasma and chronic chlamydia pneumonia are very common with Lyme... where there is smoke there is fire. Yes I think there are some success stories beating just Mycoplasma/PANS. However, if the titers are unrelenting then further investigation is absolutely required. You might PM NorCal Mom as they were dealing with extremely high titers for mycoplasma that have come down over time. I also had chronically high Mycoplasma titers along with Lyme. My titers have dropped to a range where our Dr. now feels its a non-issue. Integrative LLMDs are great at treating chronic mycoplasma.

Fantastic News!! It is always amazing to me how certain combinations of antibiotics can be so helpful. It has been our experience under the guidance of LLMD that when things plateau or regress we typically switch at least one antibiotic or sometimes do a complete rotation of antibiotics and recovery takes off again (minus the herx). With 3 children suffering from chronic infections we have experienced this type of turn around many, many, many times. I can't wait for the next update as I sense the improvements will continue.

I have to say almost 3 years later we are still dealing with some viruses. For me, my EBV was still very high and showed as an active infection. I had little patches of raised skin. I went to the dermatologist and she said that she couldn't possibly burn them all off. They are very small and not noticeable unless I point them out. However, it is very common to have them with Lyme et al. They were consider viral tags and are almost completely gone now. What has helped me was regular 35% food grade hydrogen baths (please read proper dilution on-line before taking bath). Hydrogen bath will also help with any topical strep 'perennial' or staph. I have also been doing HD IV Vitamin C and ozone treatments. The combination of those two therapies has almost completely resolved the tags. I am also doing heavy metal chelation as viruses like to cling to heavy metals. I will rerun my titers at the one year mark in November of 2014. I am hopeful we have gotten at root of the problem.

Like the article. Thanks for posting.

We have had a horrible yeast problems in our family. Yeast/fungus/mold are essentially classified together with yeast converting to fungus. They throw off horrible toxin's along with Lyme and those toxin's cause a diverse set of symptoms. For us, it took dealing with the "toxin's" to effectively deal with the yeast problem so it wasn't only just killing the yeast that helped. You might ask your LLMD for an extended trail of Chlorestyramine. I am curious if you have lab results for glucose levels, hormones and cholesterol. If so, what was the result. To determine our issue we used Real Time Labs Mycotoxin Urine Test however I understand it is not available in NYC. Have you done Shoemaker panel or his visual test on-line? I also think he might be helped by TMS therapy 'magnetic' therapy if its in his brain.

I definitely know individuals with Borrelia Hermsii both PANS and 'chronic lyme' individuals that are not positive for BB..... To me, if feels "almost" like the same course of disease as Borrelia Burgdorferi. We have a cluster of individuals that are very sick around Monterey area of CA. One of the sick individuals I know believes it hits the Central Nervous System harder. I haven't researched it much so can not confirm the information. I'll be interested in what your Dr. says about it.

Mold can come from any environment and is often found in certain foods. Our children's C4a were also normal at 1,000. We only discovered mold when we did the Real Time Mycotoxin Urine Test.... Here is some information on their test. They actually look for the toxin associated with the mold. The toxin's from mold and lyme can reek havoc if you can not detox properly. http://www.realtimelab.com/patients-mold-and-mycotoxin-information/mold-information-mycotoxins

We do/did find cycles with our kids. Younger DS raged intensely every day for at least a week or more after an antibiotic rotation, then it settled into raging every Wednesday. He did this for at least two months before it finally settled and his baseline improved. At the time we were treating Bartonella and Babesia. Recently, he got a full body rash that cropped up once a week on Thursdays when we added Mepron into his protocol. The first time the rash appeared it was so bad I rushed him to his LLMD and because it looked like it was self resolving we choose to continue treatment. He got the rashes for at least six weeks but each time it happened it was less coverage over his body (took photos) and also resolved within a days time. I can only assume it was Babesia as both times the weekly cycle cropped up we were treating with anti-marials. We have also found our kids would flair right within the 28 to 34 day cycle for Lyme. We also track 3 days before full moon and after as it can indicate an issue with parasites due to magnetic pull and activation of the reproduction cycle. Our LLMD often pulses parasitic therapies around the full moon cycle for this reason. Babesia is considered a parasite. I would pick a few predominate symptoms like rages, rash, specific tic, compulsion and track the days that they seem extremely bad. I just noted it on my calendar. Each time we switch antibiotics I note it as day 1 on our calendar. It is shocking to see how easy it is to pick up on a cycle in retrospect. My friends son was cleaning dishes over and over (not normal behavior) for three days during a typical Lyme cycles at one time. Funny but not, now that he is doing better we can laugh about his cleaning obsession. It is the symptoms that make you go "Hmmmmm where did that come from" that I would track. Especially those that crop up within 48 hours of starting a new antibiotic.

EAMom: From what I understand there is no way to test for B. Miyamotoi unless sample is sent to a research lab. B. Miyamotoi was found at Stanford Dish and Windy Hill. However, it is my understanding Advanced Labs Culture picks up all spirochete in sample and "believe" there are 11 known strains of Borrellia perhaps this includes the Miyamotoi Sprirochete.

I would also suspect Lyme based on her current symptoms and test results. I would also have her properly evaluated for mold related illness. Those that have a mold issue don't often make much headway with antibiotic therapies and suffer from a lot of inflammation. If you are unsure of the possible Lyme diagnoses you can always do further confirmatory testing. Perhaps ask Dr. T to authorize the Epitope Band 31 Test via Igenex... That particular tests looks for the antigen of Lyme specifically for band 31 in which you have an IND. Igenex keeps blood samples for several months and would only require a phone call or faxing of order slip if she was tested recently. LLM does have a wonderful LLMD and is close enough to help. He could provide confirmatory Lyme testing, testing for co-infecitons, mold evaluation and integrative approach to Lyme treatment.