sf_mom

There are many ways to test for Lyme. Some better than others. Most LLMDs use specialty labs. Advanced Labs: Lyme culture must be off antibiotics for one month NeuroScience: Not good if you have any immune deficiencies Igenex: Tests broader range and specific proteins 'bands' of Borrelia. Igenex Urine Dot Blot is a urine test looks for an antigen but would need to provoke die off with antibiotics or herbs. The Dot Blot is good if there are immune deficiencies. Remember immune deficiencies will create a low antibody response. Stony Brook Labs: Similar to Igenex There are other speciality labs. We tested several ways and were able to get both antigen and PCR (DNA) positive results. Many with PANS/PANDAS do have Lyme however sometimes combination antibiotics will not bring about full recovery. Herx's can be intense. We have found a home in integrative medicine that looks at all aspects of the immune function. Edit: I would agree that not all have Lyme/TBIs but should be ruled out.

Just dealing with mold and methylation could take you a long way towards recovery. Lower MSH levels due to mold toxins will also continually keep the door open for infection and make the chronic ones harder to bring to a manageable level. Detoxing mold is not easy and cholestyramine can strip vitamin/minerals so supplementing appropriately for methylation is important. Cholestryramine will also initially cause symptoms to flair and sometimes intensely. Does your DS have immune deficiencies? If so, then maybe put IVIG to the forefront of treatment. If not, I would proceed with treating methylation first and then detoxing mold second. It could take several months to treat methylation or build up on the necessary vitamins and then maybe even a year or longer to detox mold. I would use Spectracell testing while detoxing mold to confirm vitamin/minerals are a remaining at appropriate levels. Spectracell is not a serum test, it tests the inner white blood cell to confirm proper utilization of vitamin/mineral levels. We are using the Real Time Labs Mycotoxin Urine test as baseline for mold. Every time you draw blood I would continue to draw IgG subclasses. The repeat subclass might help you to get insurance coverage for your child in the future. Mold plus infection can definitely cause allergy like symptoms. FYI: Spectracell test glutamine levels as well.

Daily Cholestryramine (prescription). From the article Cholestepure is also good but have not tried it. Per LLMD, there are supplements to help raise MSH. We have not used them yet so I don't have any information. I also think IV nutrients are helping with detox issues. For me, yeast diet. DS eats a very healthy but hard for him to maintain such a restrictive diet. Also, nebulizing Glutatione every other day. http://www.pureformulas.com/cholestepure-180-vegetable-capsules-by-pure-encapsulations.html Also interested in herbals like Byron White A-FNG. http://www.wayneanderson.com/pages/formulas/afng.html

Have you checked her for mold? As you may remember we see the same ART Dr. as well as an LLMD in CA. Our older DS's C4As were checked initially and completely normal at 1,000. We then did Shoemaker panel and MSH was a little low and one other marker was a little high but nothing that screamed like he had a mold issue. He never came up for mold via ART but did for Cholestyramine for a brief period of one month during treatment and there was no visible mold in our home. We had touched every surface when we moved into our home five years ago with new carpets, paint, floor refinishing, tile cleaning and resurfacing, fixed all potential water issues, etc. It took a tree falling on our home this past summer to discover both white and black mold behind the walls. We then tested for mold via the Real Time Labs Urine Mycotoxin test. Our older DS's results were 6.98 for Trichothecene 'Black Mold' with a reference range of .18 to .2 and it was the same black mold found in our home after tree fell. We had ongoing yeast/fungal issues with all our kids, still do. Mold/yeast can definitely cause AD/HD symptoms. I posted a this particular article yesterday on mold/biotoxin's and thought it might be helpful to read. http://www.royalrife.com/mold_toxins.pdf Our older son has never been better since ongoing detox for mold. Initial detox'ing can make symptoms worse.

If treatment of mycoplasma does not provide the resolution of symptoms as hoped, definitely reconsider investigating Lyme further with an LLMD and specialized testing for Babesia. All three of our children have Babesia none of them had the symptoms listed above either except low blood pressure and low range of normal red/white blood cell count. Like others, their predominate symptoms were/are low grade fevers in mornings or late afternoon, low blood pressure, occasional air hunger in older DS especially when playing sports, temperature intolerance and periodic night sweats. An example of temperature intolerance would be needing to pull covers off at bedtime or suddenly needing to take a jacket off when it is cold outside. Sinus infections are also common with Lyme/Mold toxicity. MSH levels are low often due to toxins opening the door for MACRONS/'Staph' or other infections in nasal passage. Here is some interesting information on mold. Again, you do not need to have all the symptoms listed to be affected. http://www.royalrife.com/mold_toxins.pdf

Mycoplamsa is a bacteria that lacks a cell wall, is contagious and can also be transmitted by a tick. Pneumonia can be viral or bacterial based.... bacterial pneumonia's are often Chlamydia or Mycoplasma pneumonia. Chronic mycoplasma is typically treated with a combination of antibiotics. Was your son ever bitten by a tick? Have you had him evaluated for Tick Borne Illnesses that includes co-infections. Low blood pressure is a fairly specific symptom of Babesia. Many children with PANS have Babesia as one of their co-infections. See below. SymptomsSymptoms of babesiosis are similar to those of Lyme disease but it more often starts with a high fever and chills. As the infection progresses, patients may develop fatigue, headache, drenching sweats, muscle aches, nausea, and vomiting. Babesiosis is often so mild it is not noticed but can be life-threatening to people with no spleen, the elderly, and people with weak immune systems. Complications include very low blood pressure, liver problems, severe hemolytic anemia (a breakdown of red blood cells), and kidney failure.

We are using Cholestryramine daily to detox mold. Our problems didn't start until we moved into our last house either. However, mold is just one of the issues we have discovered along the way. It took a tree falling on the home to discover both black and unidentifiable white mold behind the walls. DS is positive for the same black mold that was found in high concentration in the home. His C4As were normal and Shoemaker Panel IND. We found the mold in our son via the Real Time Labs Urine test. We are relieved to be out of our last home and living in a home that was environmentally tested prior moving in. Edit: I meant to add to my prior post that our son might have been so depleted of vitamin/minerals from heavy metal chelation, biofilm/oxygen related therapies and perhaps mold.

We are taking 2,000 mg of Protocol Krill Oil. It is hard to say if there was an increase in symptoms when we started because we did a lot at the time. A little of topic: Older DS remaining issues were occasional dark circles under his eyes, often said he 'just wasn't feeling well', stamina, nail biting/attention, OCD has resolved for long time now, TICs have resolved for long periods of time and then suddenly resurface for brief periods (very mild). I've noticed resurfacing of tics around full moon and change in altitude while skiing. When we tested his vitamins/minerals with Spectracell he was deficient in Glutathione, CoQ10, Selenium, Vitamin C, B -12, Copper, Zinc, Calcium, D3, Manganese, Typtophan (Amino Acid test by Dr.'s Data) and Omega's (different test than Spectracell for Omega's). He has high nagalase (we have not done GcMAF shots). IgG and IgA deficient (not currently doing IVIG). This information was just shocking to me because we were supplementing with many of the things above. Spectracell measures white blood cell utilization of vitamins/minerals.... not serum levels. At this point, our LLMD decided to prescribe IV nutrients for many of the things above. Since starting the IVs, the just not feeling well, occasional dark circles and nail biting/attention has mostly resolved. I am convinced something is still working on his immune system. He still has a yeast issue on and off and know he has high levels of black mold (via urine test not Shoemaker panel) and we are currently detox'ing him for mold. Many of the above symptoms could be attributed lingering Babesia, FL 1953 or mold/yeast. His younger sister is positive for FL so we are testing him as well to see if that is the issue. It will take several months to fully detox mold. Altitude/Full moon symptoms makes me think its still Babesia or FL. Mepron would not treat FL.

RowingMom: FYI - We used parent oils for 3 years based on Peskin philosophies and when we recently ran Spectracell Vitamin/Mineral test we found both older DS and myself to be deficient in Omega 3s and I was deficient in ALA. On our previous Spectracell DS was deficient in ALA . As a result, we switched to Krill Oil. We've used Phosphatidyl Choline in both powder and IV form. Per our LLMD its suppose to help deliver herbs/medication to the brain and is also very calming. IV therapies are definitely helping but there is a lot of vitamins/minerals plus the Phosphatidyl Choline so I am unable to single out its sole benefit.

Our entire family is impacted by heavy metals and with almost the same ratios of lead and mercury. Our DD shows positive for additional metals other then lead/mercury. In our experience heavy metal chelation can really cause symptoms to flair, deplete necessary vitamin/minerals and cause yeast to flair. It is important to have methylation and vitamin/mineral deficiencies and infections under control in advance of chelation. I know several kids with heavy metals plus infections, have been treated for several years and only attempt gentle metals detox. It is thought many of the 'bugs' bind to these metals releasing them when pulled with EDTA, DMSA, DMPS. (Including viruses). I am currently doing IV Chelation, been treated for Lyme et al 4 years, off antibiotics and flair each time metals are pulled. Yeast also flairs.

No body knows... not even the Dr.'s fully understand. I think Dr. B probably has the best understanding of Lyme and its impact on PANS of all the Dr.'s listed above. After 4 years of treating, I have come to the resolution that you need to stick with what works for your child and know there are alternatives to treatments if something doesn't work. Some are treating purely auto-immune and those therapies have helped their children tremendously. Some of those treatments have also failed for others. We have treated solely for chronic infection since 2010 when our son looked like he couldn't sustain benefits of IVIG. We have had great success with this direction but it has been a rocky, slow recovery. For others, treating solely for chronic infection hasn't been the answer either. Neither path is easy in my opinion. When we started this journey it felt like there was a narrow perspective on how to treat, now with many parents experiences of failures and successes with their children that scope has change tremendously. There was a time if IVIG didn't work it was thought the child was just 'mentally ill' and did not have PANDAS... thankfully we are beyond that perspective. IVIG can benefit Lyme patients. Dr. Katz from CT spoke about it at ILADS this past year. Doses might be slightly different than PANS/PANDAS. Steroids can also benefit someone with Lyme. A friend of mine with chronic Lyme has been on low dose steroids for Adrenal Fatigue since last year. For me, steroids triggered seizures while pregnant with twins and as a result we steer clear of their usage. Again, it can be very individualized and based solely on treatment response.

I know you don't want to hear this but with the consistent bed wetting it could indicate a mold issue. I highly recommend the mycotoxin urine test by RealTime Labs. Most LLMDs know of the test and even perhaps secure kit prior to Dr. B visit and have him sign off while there. Often any individual with mold toxin issues will have difficulties with treatment and not make much headway on antibiotics. Do you know if he has been exposed? Common to have mold issues with Chronic Lyme.

Try Dr. Chitra Bhakta. If you are willing to travel to Santa Barbara or Bay Area there are other really good Dr's who can help your son. You are welcome to PM me for names.

He started treating several PANS children in the fall of 2009. His first HD IVIG for PANDAS was in Jan 2010. There might have been a couple of children he was seeing prior for immune deficiencies but were only getting low does monthly IVIG. In general, a good way to qualify for IVIG is to have "repeat" bloodwork of IgGs Subclasses showing immune deficiencies.

Both our LLMD and Integrative Pediatrician us MDL virus panel. They also test for mycoplasma titers via them. They are looking for symptoms, titer level and treatment response not IgG verses IgM. To them, high IgG EBV titers does not indicate past infection. Our DD's EBV IgG is roughly 8 times the normal level and similar to my IgGs. I also have positive IgM but DD does not. http://www.mdlab.com

Just wanted to mention our experience was similar.... Older DS received MMR, had a strep related illness and virus all in three week period at 5 years of age. He woke up a different child, was diagnosed right away with PANDAS and is now 9 years old. Like others have mentioned healing does take time. The assault to his immune system of MMR/Strep/Virus was his trigger however he had multiple chronic infections that we were unaware of at the time inclusive of gestational Lyme (passed from me to him while pregnant). He would more accurately be diagnosed with PANS (term that came about after his original diagnoses) but no longer suffers from ongoing TICs or OCD. He still has minor issues related to chronic Lyme but suspect he will live a very normal life. You are in good hands to get the initial necessary help you need. They do get better once you unravel all the specific issues for your child.

We use Krill Oil as well. http://www.pureformulas.com/krill-oil-500-mg-neptune-nko-60-gels-by-protocol-for-life-balance.html#sthash.bwAx4vmC.dpbs

Ozone is a lot stronger and not always tolerated easily at first. Because our older DS had chronic cough he could not handle ozone nasal insufflation initially so we started to nebulize with hydrogen and worked up on dose. He can now tolerate a very low dose of ozone and only for a minute. However, we can ozone insufflate his ears with no problem but I always have a herx from it. Never did I imagine to have something chronic in my ears but it/was definitely there. Herx's are the following: obvious short term memory issues for about 24 hours, sometimes headaches, sometimes fatigue, ear aches, ringing in ear, joint pain. All resolve fairly quickly.

From the same symptom Babesia symptom list posted above. "* Can cause headache, occipital and/or frontal (especially behind the eyes), or the sensation of pressure without pain." There are 11 strains of protozoa/BLO and we are only able to test for 2 with Igenex. Fry Labs now has a protozoa panel that will test for 7 different strains. If the odor is ammonia 'like' it might also be yeast. Is his tongue white? Does he have any white patches of skin on his face? Does he have any eczema? All of these could be indications of yeast. A comprehensive stool might help you determine if there is yeast. Would your current Dr. provide a trial of Nystatin/Diflucan. Or perhaps Alinia which will cross treat several infections inclusive of protozoa.

Similarly, my friends son did a nasal swab and he came back positive for 5 bacteria's both Strep and Staph were included in the mix. I don't even remember the other 3 bacteria's. Beg Spay did not help him or me. LLMD thought biofilms in nose. Again, low MSH (from mold exposure) will make it difficult for anyone to eradicate Staph. Shoemaker explains on his website. The only relief I have had from sinus issues has been from nebulized hydrogen peroxide or ozone. Hydrogen peroxide is very inexpensive and easy to use if you have a nebulizer. See my post under FLUSHING RED CHEEKS on hydrogen treatments.

A good LLMD, biomedical/Integrative Autism specialist would treat for elevated viral titers and look for improvement. Like Chicken Pox/Herpes the virus may always be present in the body and only activates when the body is under stress. With my kids, I look at the comparative level of IgG or IgM and symptom response. Hopefully, whatever titers you are dealing with will lower with treatment. It has been true for us, Coxsackie titers went down very slowly over time however EBV is still high in our family. Sometimes the temperature intolerances, red ears, etc. are related to Babesia or FL 1953 Protozoa. Little blurb on BLO (Babesia or Babesia like organism which includes FL 1953). See if you can't pick up on a cycle of the flushing. Him being sick every month leads me to think he has Lyme. Lyme cycles every 28 to 34 days. Have you check him yet? For the patient (with any of the above) that also has temperature intolerance, layering clothing at night due to chill then throws off the bed covers due to overheating, BabLo cannot be ignored. http://www.wayneanderson.com/pages/diseases/babesia.html From the same website information on Fungus/Yeast. Chronic sinusitis, stuffy nose, otitis media and external, sore throat, cough, asthma, SOB, esophogitis, nausea, belching, abdominal bloating, gas, IBS, anal itching, vaginosis, vaginitis, cystitis, frequent and urgent urination, skin lesions, irritations and itching, opacity of the nails. http://www.wayneanderson.com/pages/diseases/afng.html

LLMD uses it regularly. My understanding is that Bartonella moves in and out of blood stream every three days and why there is a triple draw. We have not done the test.

Yes... check for viruses. MDL has a good overall viral panel. BUT, specifically I'd check for Coxsackies, Fifth's (Parvovirus 19) and HHV1 (can cause a lot of mood liability). I believe the last three are not on MDL panel and can be tested through Labcorp and Quest. If viruses are an issue the MDL titers will help to create a baseline for treatment. As for his sinus issues it could be fungus/yeast and why antibiotics are not helpful. There are some anti-fungal sprays..... we have not used them so I don't have a name. Nebulizing Hydrogen Peroxide would take care of the issue as well. Food Grade Hydrogen 3%. We nebulize all three children every two - three days and we have not gotten any colds this year. We worked up to larger dose and was recommended by our NP who does a lot of Hydrogen therapies. Below is some information on how it works. http://healyourselfathome.com/HOW/THERAPIES/H2O2/nebulizing_H2O2.aspx ♦ 3% FOOD GRADE hydrogen peroxide MUST BE FURTHER DILUTED for use in a nebulizer: - As a preventative to keep infections at bay / promote healing – add 0.5 ml (cc) (or ~12 drops if using a dropper) to a nebulizer filled with 5 ml (cc) distilled water. Use once a day or as often as you feel the need - To fight a lung, bronchial or sinus infection or to get hydrogen peroxide into the body for a systemic treatment – add an amount (see below) of 3% hydrogen peroxide to a nebulizer filled with 5ml (cc) distilled water. Use several times / day as convenient. √ The lowest effective dose is ~0.5 ml (cc) or ~ 12 drops (if using a dropper) in 5 ml (cc) distilled water for about 3 minutes. (As a guideline: 1 ml usually contains about 25 drops, but obviously varies with different droppers). If this is your first time using this therapy, use this dose (or even less) to test your reaction. √ Increase dose as tolerated up to a maximum 2.0 ml (cc) in 5 ml (cc) distilled water for up to about 10 minutes (maximum dose determined from anecdotal reports) Nebulized H2O2will not only contact the lungs, it will also enter the bloodstream, where it will oxidize pathogens and toxins. Caution must be exercised by smokers and individuals who have used prescription and nonprescription drugs in their lungs, and those who are very sick. If H2O2 solution is too strong, the H2O2 reaction with a heavy contaminant or microbial presence could promote tissue-damaging inflammation in the lungs and a potentially dangerous systemic “die-off” effect, called the Herxheimer Reaction

I haven't read all the responses lately so I apologize if someone has already mentioned this to you since my last post. On of our Dr's believes SKIN PICKING and NAIL BITING is typically trigger by one of three things; Vitamin/Mineral deficiency (Calicum, B, Copper/Zinc ratios), Parasites or Yeast. Again, I would talk with Dr. M about running the SpectraCell Vitamin/Mineral test and also a comprehensive stool analysis. The stool analysis will look for Parasites and Yeast. The SpectraCell will look for the inner blood cell utilization of vitamin/minerals and not serum levels. At one point our older son was biting his nails non-stop. We had been doing chelation with him which depletes vitamins/minerals and nail biting started shortly after starting the chelation process. Since adding higher levels of Zinc, Calcium, Copper his nail biting has completely stopped. We were supplementing these vitamin/minerals at the time but much higher doses have helped: 120 m.g. of zinc, 6 m.g. of copper, 1,000 m.g. of Calcium. I do not recommend supplementing at these higher doses unless you have a Dr. following the copper/zinc ratios. I am hopeful with antibiotics and perhaps some zinc you will be make some headway with the eating issues.

LLM made some good suggestion and thought I'd post some supportive information in relationship to them. "Symptoms of zinc deficiency (weight loss, appetite loss, and behavior changes) resemble those of anorexia nervosa to some extent. This has led some researchers to theorize that low zinc levels may be related to the onset of the eating disorder. 1,2 Preliminary evidence including one small, double-blind trial suggests that zinc supplements might indeed be helpful in treating anorexia nervosa, possibly enhancing weight gain and helping to stabilize mood. 5,20,21 One frequently quoted study often used to discredit the use of zinc in anorexia appears to be relatively meaningless when inspected closely. 4,20,21" The following information on Copper/Zinc relationship can be overwhelming. I have read the article several times myself and it has eventually sunk in. At your next appointment with Dr. M, have him run the Spectracell Vitamin Test (if he hasn't already) and see what her copper/zinc levels are currently. He can guide you appropriately on the ratio of Copper/Zinc. In our experience supplementing at what seemed to be high doses of zinc (30 m.g. daily) wasn't enough. http://www.tvernonlac.com/copper-toxicity.html