sf_mom

Rachel if your son is immune compromised and has low amino acids your son will have difficulty making any antibodies even for infection. Often these kids, like my DD you need to use alternative testing that doesn't look for antibodies. With antibody testing DD looks serological negative for almost everything. Her twin brother who is a lot more immune healthy comes up PCR positive for a lot. She was truly regressing at 2 1/2 years of age. Thankfully we have her twin and older brother who have helped determine her infections plus alternative testing. She is very responsive to combination antibiotics and also quickly regresses when taken off them. For now, we are hoping that the monthly IVIG will help her to make headway with her chronic infections. Unfortunately, the antibiotics have probably only been keeping things in check and her body was working overtime to barely maintain. With monthly IVIG she has matured, gone through a growth spurt (almost as tall as her twin), is almost an appropriate weight, hair is growing and is finally losing some of her baby teeth, etc. Her vitamin/mineral deficiencies still reflect what is typical with ASD: copper/zinc ratios that are off and switch from low zinc/high copper to low copper/low zinc, low D3, iron, methylation issues, etc. Again, we use SpectraCell to track vitamin/minerals not serum levels and monitor her regularly. SpectraCell looks at inner white blood cell utilization of vitamin/minerals. I was also told that low IgA can indicate an allergic reaction to something. In our case, over the last 4 years all our children had became immune deficient inclusive of IgAs. Because our children are not fully biologically related we knew it had to be something environmental. Then a tree fell on our home last summer exposing both white/black mold behind our walls... siding of our home needed to be pulled to find the mold. The house is now condemned and we do not enter without gloves and mask and will come down completely. Other indications of mold is low WBC and potentially slight high liver enzymes. Older DS had dark circles under his eyes and was often pale/yellowish or gray in skin tone. I highly recommend reading MOLD WARRIORS. The gluten antibodies that cross react with mold are the ones associated with Celiac's Disease. I am wondering if your son makes antibodies or if you actually tested for Celiac's. Also a child with mold issues may appear to have many allergies inclusive of food and might also have what appears to be ongoing sinus issues. Our original testing for MOLD that included C4As and then the Shoemaker panel wasn't overly indicative of mold. The only way we found that mold was a problem was by testing the "URINE" - by Real Time Labs Mycotoxin Test. We only did the Real Time Labs Test after we found the extensive mold behind the walls. A huge regret of mine is not having tested for mold earlier in our treatment process.

Since you know he improves with antibiotics I would look more extensively for chronic infections that might be triggering symptoms. You can google Lyme Induced Autism and see the appropriately ways to test for Lyme and co-infections. Most do a provocation and look for antigen in urine as often the immune system is too dysfunctional to produce proper antibody response with standard testing. Yeast/Fungus/Mold are all the same thing. Mold really caused our older son to tic as well. When we moved from our last home and detoxed aggressively for mold our older son completely stopped TICing. He had a chronic cough that would not abate and would come and go over 4 years time that is finally resolved. For mold, I would do the Real Time Mycotoxin Urine test. I am assuming you have already checked for chronic viruses. If not, I would recommend testing with MDL. They have a very good viral panel and you can also test for Mycoplasma and Chlamydia Pneumonia with them. Definitely test IgG subclasses and if there is deficiencies consider IVIG. Deficiencies in 1s & 3s is typical with Lyme. Low IgAs and deficiencies across the board along with Gluten antibodies is common with mold issues. Mold and chronic infections will suppress the immune response making it difficult to fight any ongoing/chronic infections. Repeat labs results on IgG subclass will help you to quality with your insurance for treatment. GcMAF has been very helpful to the individuals I have spoken with about it but most had treated for chronic infections first. I understand if Lyme is involved and has not been treated properly most will relapse after shots are stopped and nagalase will climb. However, it can bring a lot of relief while treating. We are considering it for our two son's that are in the 1.2 and 1.3 range if it does not lower on its own after detoxing mold. You might consider TMS therapy. Although only FDA approved for depression, I understand it is super helpful for OCD. Right now, I know its available in Northern CA, Los Angeles and I believe Bradstreet is now set up to do it as well.

Why are you being prescribed Diflucan (flucanazole) and Omnicef (Cefdinir)? Does your son currently have a yeast or other infection? Yeast/fungus/mold can cause all the issues you describe and why you might be seeing improvement with treatment. BUT, improvement could also indicate there is some type of other chronic infection in addition to yeast/fungus/mold. We have boy/girl twins and our DD had language regression at 2 1/2 after MMR. Both would have been considered ASD, DS high functioning and they have been treated since 3 1/2 years of age by neurologist, biomedical autism specialist and LLMD in Northern CA. They are now 6 1/2 years of age and functioning up to grade standard or above. One has a nagalase of 1.3 and one has nagalase of 1.0. We have not treated with GcMAF yet. Both have immune deficiencies, one worse than the other and she receives monthly with low dose IVIG as a result. They have been treated predominately with combinations antibiotics, periodic rotation of anti-vitals all while we addressed methylation, detox, gut issues. They have the following gestational Lyme, Bartonella, Babesia, FL 1953, EBV, HHV6 and Coxsackies, ongoing yeast/mold. We've obviously attacked it from all angles .... not any one thing has been the magic cure all but all has helped to bring them towards recovery and living a normal life.

What is your child's C4A result? A Dr. in our area believes anything above 10,000 is indicative of mold. However, all our children had normal C4A's at roughly a 1,000 each and improved with Lyme treatment so we thought mold was a non issue. We were wrong. If you want to get a better perspective or baseline of mold for your child I would run the Real Time Labs Mycotoxin Urine Test. It will provide what type of mold it is and current levels. Like LLM stated it could be coming from anywhere even your child's school. You are lucky to have found the mold at the front of treatment as it can really stall recovery and hinder antibiotic therapies. Our older son is doing the best he ever has since moving and detoxifying for mold. He no longer suffers from what would be considered traditional PANS symptoms of TICs/OCD. Our entire family has improved and I am officially off antibiotics since the beginning of the year. Mold was a huge problem for us as well as the Lyme and co-infections.

All of children have immune deficiencies inclusive of IgAs. Their IgA numbers are the following: DS - 10 years old - IgA: 38, DS - 6 years old - IgA: 40, DD - 6 years old - IgA: 21. DD's subclass are also very low in every subclass. We have tracked our children's subclasses since older DS's on-set of PANS at 5 years of age. Our twins subclasses were slightly low at age 3 but not nearly as bad as they are today. Older DS's subclasses were normal in 2009 and he is now also deficient across the board. Our children are not fully biologically related to each other but were all carried by me in-utero. We believe biotoxin illness/mold at our old house along with the gestational Lyme/co-infections has really worked on their immune system. Mold can tragically suppress the immune response an low IgGs/IgAs is a byproduct. It is our DD's neurologist perspective that the mold was the environmental trigger that cause all three children to develop low IgAs over time. Those with Lyme typically have deficiencies in their 1's and 3's subclasses. You can test for mold via Real Time Labs Mycotoxin Urine Test. Good article on mold. http://articles.mercola.com/sites/articles/archive/2011/09/03/molds-making-you-ill.aspx Our DD does receive a low IgA monthly IVIG product of Octagam and definitely helps while we continue to treat Lyme and detox mold. Older DS is almost fully recovered and has made progress toward recovery without regular IVIG treatments. He did have 3 hd IVIGs September 2009, November 2009 and January 2010 shortly after on-set when we thought solely PANDAS.

I think you can request test kit directly from SpectraCell and have your Pediatrician or similar sign off on requests. It is approximately $275 and then we file with insurance for reimbursement. Our LLMD runs the tests for us (has kits in his lab) but all our Dr.'s now use them to track vitamin and mineral levels.

Yes at 8 to 1 ratio. Zinc to Copper. Since he is so sick, I would always ramp up on any dose. Once the zinc/copper ratios level out the body starts to detoxify. If he has a metals problem, the dumping of metals may cause a yeast issue. Watch for white/black tongue or itchiness when supplementing with zinc/copper.

I would test her mycoplasma titers immediately and maintain antibiotics until she stabilizes with improvement... potentially 3 weeks if you have enough Biaxin then take her off and see how long it takes her to regress. As you know, if she regresses within a few days to a week it is more likely she is still dealing with Bartonella. If its approximately a month then more likely still dealing with Lyme. For mycoplasma, I would track direction of titers either IgG/IgM if she has them and retest when off antibiotics and if she regresses. At the end of my antibiotics treatment we went down to just Moxatag and I was able to maintain improvements. Now that I am completely off antibiotics we plan pulse antibiotics when needed to treat anything that resurfaces.

I would test his zinc to copper ratios. Please read attached article. Self limiting diets can be a byproduct of these imbalances and also often related to anorexia symptoms. Our twins did not have anorexia but did have limited diets like your son. Sugar cravings can indicate yeast/fungus. Too much copper will cause the following. "Copper toxicity reduces the ability to cope normally with stress and the inability to respond adequately can provoke many fearful emotions, including anxiety and panic. In many cases, the body over-reacts to nearly any stress rather than under-reacting. This constantly puts the body into a full fight or flight defensive reaction which normally includes the emotions of anger and fear. This is why chronic stress and adrenal fatigue are often associated with anxiety, panic, phobias and compulsions. Hypoglycemia and blood sugar swings due to adrenal fatigue are a well known cause of many mental and physical symptoms such as depression, irritability, mood swings, poor concentration, poor memory, dizziness, fatigue and sleepiness." Our DD responded immediately (3 days) to higher levels of zinc of 120 m.g. per day. Always supplement zinc to copper ratios at 8 to 1 zinc/copper, for example 80 m.g. zinc and 8 m.g. of copper. These are very high levels of supplementation and should be tracked regularly by Spectracell to ensure ratios are maintained appropriately. http://www.tvernonlac.com/copper-toxicity.html The best test for these deficiencies is SpectraCell which looks at inner white blood cell utilization of vitamin/minerals and not serum levels. http://www.spectracell.com/patients/patient-micronutrient-testing/

Is your PANS DS on combination antibiotics? If not you might call Dr. L to secure another antibiotic to help deal with the exposure and most likely the strep he has as well. The other thing we do is nebulize all the kids with hydrogen peroxide when strep enters the household. This is the nebulizer we use: http://justnebulizers.com/mini-comp-compressor-nebulizer-system.html We put 2 ML of 3% Food Grade Hydrogen Peroxide along with 2 ML of distilled water into a nebulizer. You can work up to that amount. Initially they might feel the hydrogen in their nose or throat as its killing the bacteria. It will take care of any biofilms or lingering infections/viruses in nasal passage and back of throat even if its not strep. You can google, as there is a lot of information on-line about use of hydrogen peroxide. We nebulize until all congestion is resolved. We also bath our kids once a week with one cup of 35% Food Grade Hydrogen Peroxide in bath water. This is a much different concentration then what you would nebulize with... 3% verses 35% concentration. You can purchase the 3% 'Food Grade' concentration at almost any pharmacy for $1.50. We purchase the 35% concentration at this website: http://www.purehealthdiscounts.com/h2o2.htm It really works. The baths help to keep bacteria off the skin preventing continued infections within the family. Edit: I should add we use the MASK when using the nebulizer to cover both mouth and nose.

Per our Dr. yellow tongue indicates yeast and black tongue indicates fungus. Both can be byproduct of antibiotic use.

We currently do IVs with HD Vitamin C, Phosphatydil Choline, Minerals plus Meyers Cocktail. Glutathione is typically not done on the same day as it counters the HD C. You can google HD IV Vitamin C and cancer and a ton of information/research will come up. Vitamin C via IV at very high doses converts to Hydrogen Peroxide and will treat intercellularly both chronic viruses/infections. A great side benefit is it also stimulates collagen so my skin looks the best it ever has. Our 10 year old son and myself get the IV mix every other week. We are both well recovered but still have a few things that crop up post infusion like fatigued for a day, headaches, increase in brain fog, etc. On the weeks we don't have IVs, we do ozone therapy. With these therapies, I was able to stop antibiotics. I started in June of 2013 and was able to completely stop antibiotics by February. Our son started these treatments protocols in September and we are hopeful he will follow the same path of recovery but unfortunately he has very high mold levels which may extend his treatment timeline. Since your child is more symptomatic you may have more issues post IV. Remember it will treat the infections/viruses so there is always the potential of a herx. Our son is 73 pounds, gets 20 grams of C and has an ideal saturation. I typically get 50 grams and have a very high saturation levels. I don't think Lyme is that problematic for me at this time but still have high EBV and mold/fungal problem that we are working on.

I am not sure how you tested for Lyme but it doesn't appear your results are reporting specific bands. The reason many use Igenex is they report/test for a wider array of antibody response to proteins of the BB (bands). For example: bands 31, 34, 39, 23, are Lyme specific bands. I've attached quick review on testing plus the bands and their meaning below to give you an overview of testing. I was positive for bands 18, 31, 34, 41 if I am remembering correctly. It is not a CDC positive result but because many of the bands were Lyme specific we followed up the test by looking for the antigen of band 31. An antigen is like finding DNA of the bacteria and I was positive. http://www.lymedisease.org/lyme101/lyme_disease/lyme_diagnosis.html Igenex's reports on most of these bands. Below is what each bands represents. Due to the type of headaches you have explained on the forum, I have always felt you may have Babesia. Testing for co-infections is a separate test. You are only able to test for two of strains of Babesia that are common in humans B. Microti and B Duncani. 18: p18 flagellin fragment 20: cross-reactive for Borrellia 21: unknown 22: specific for Bb, probably really the 23/25 band 23-25: outer surface protein C (OspC), specific for Bb 28: outer surface protein D (OspD); Oms28; specific for Bb 30: OspA substrate binding protein; common in European and one California strain 31: outer surface protein A (OspA), specific for Bb 34: outer surface protein B (OspB); specific for Bb 35: specific for Bb 37: specific for Bb 38: cross-reactive for Bb 39: is a major protein of Bb flagellin; specific for Bb 41: flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection 45: cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis) 50: cross-reactive for all Borrellia 55: cross-reactive for all Borrellia 57: cross-reactive for all Borrellia 58: unknown but may be a heat-shock Bb protein 60: cross reactive for all Borrellia 66: cross-reactive for all Borrelia, common in all bacteria 83: specific antigen for the Lyme bacterium, probably a cytoplasmic membrane 93: unknown, probably the same protein in band 83, just migrates differently in some patients

For us: Infection, mold toxins and nerve issues associated with Vagus Nerve. This particular nerve impacted the way older DS tongue functioned and rested in mouth plus potentially issues with frequent urination and increases in urination with flairs. I also had frequent urination, excess red and white blood cells in urine, what appeared to be ongoing urinary track infections, interstitial cystitis. More likely the combination of the above issue. Lyme like the bladder lining. Here is a blurb on the vagus nerve and how it impacts someone with Lyme et al. "The vagus nerve (also called the tenth cranial nerve) is the longest cranial nerve and one of the most complex nerves in the human body. It originates in the medulla oblongara (part of the brain stem) and travels to the pharynx (throat), larynx (voice box), trachea (windpipe), lungs, heart, esophagus, and intestinal tract to the transverse portion of the colon. Disease that cause neuropathy, like Lyme disease and diabetes, can damage the vagus nerve. The vagus nerve activates muscles in your throat, which are vital to a healthy gag reflex, coughing, vomiting, swallowing, and the ability to speak. It also acts like a brake on the heart, slowing down the heart rate. Impairment may result in heart palpitations or tachycardia (fast heart rate). Depth and frequency of breathing as well as blood pressure are also regulated through the vagus nerve. The abdominal branches regulate the stomach, pancreas, small intestine, large intestine, and colon. The vagus nerve also affects the kidneys and gallbladder and stimulates liver functions. Once treatment has begun with antibiotics, most patients with vagus nerve involvement report an improvement in symptoms. Common Symptoms Caused by Vagus Nerve Impairment in Lyme Disease. Hoarseness Slurred speech Vomiting Palpitations or tachycardia Shortness of breath High blood pressure Difficulty swallowing Gag reflux GI motility dysfunction Diarrhea Frequency of Urination Article originally appeared in a regular issue of the Lyme Times Fall/Winter 2005 by Dr. Rhee"

Prayers!

Dr. Chitra Bhakta. LA area Envita in AZ. I am not sure if they treat pediatrics but its worth a call. Dr. Thoring: http://www.pacificnaturalmedicalcentre.com/aboutdrthoring/ Plenty of Dr.'s in San Francisco area if you want to travel north.... just PM me. For the Folliculitis.... Have you tried anything like 35% Food Grade Hydrogen Peroxide baths. One cup per bath weekly. Have him rest his head back in the water. This is where we purchase from: http://www.purehealthdiscounts.com/h2o2.htm. The baths have eliminated a lot of surface stuff for me like tiny viral marks, liver spots and even moles (or at least I thought they were moles but probably some type of virus), dry patches of skin, etc.

It also took a long time for us as well. 4 years and counting. However, I would consider all 3 of our children well recovered. We were dealing with many of the common issues that are associated with gestational/chronic Lyme: co-infections, biofilms, heavy metals, mold, vitamin/mineral deficiencies, methylation/detox issues, etc. We no longer experience the ups and downs of PANS with illness... none of our children currently have OCD or TICS. Our children have an awful disease but there were many blessings along with that diagnoses. All your efforts on your DDs behalf will by off in ways you will never imagine.

I have talked to or heard of several individuals that have gone there via our LLMD and NP. A mother and her son went..... I understand the son had great success during his 7 weeks there. Mother did well but didn't have the same improvement her son did but was still much better. Another individual went who was extremely sick with chronic Lyme 'bed bound' also improved but was also dealing with pain post her stay there. I do hear it is a very heavy handed treatment process with a lot of supportive IV therapies.

Currently out of stock but a good chewable enzyme for dairy, casein, gluten: http://www.pureformulas.com/trienza-chewable-with-dpp-iv-activity-180-tablets-by-houston-enzymes.html#sthash.b6pcQIWv.dpbs Also another good one but not specific for dairy, casein, gluten: http://www.pureformulas.com/papaya-enzymes-180-lozenges-by-now.html#sthash.kefUMGgj.dpbs We use both but since chewable is out of stock we use capsule form the Houston Enzymes.

The radio interview you saw on Lyme is from years ago. Keep in mind these Dr.'s do not like to make strong opinions on topics that are not well researched. The current 'state of affairs' is that many LLMDs are now seeing PANS/PANDAS/Lyme induced Autism children that present with less traditional symptoms of Lyme. In our experience as treatment progresses, there is less psychiatric symptoms and more traditional symptoms as the immune system activates and responds in a more normal fashion. Our older son does not have any obvious signs of OCD but now suffers from horrible brain fog, fatigue, stamina issues, etc. He will also mount fevers and get sore throats when ill when he didn't previously. He also had swollen and kissing tonsils at time of onset and for the first two years of treatment. We did not remove his tonsils and they are now normal in size (do not kiss at back of throat). You will often read on the forum that someone will have obvious symptoms of strep in a household (parent or sibling) but the PANS/PANDAS child will only have an increase in psychiatric symptoms and no other signs of strep. When culture they are positive for strep.

Rachel: Spinal taps are not that reliable of a testing method for Lyme. Read below. The decision to do a spinal tap on a patient with Lyme Disease is based on the physical findings. Obviously, if a patient has papilledema, they will be tapped after a CAT Scan or MRI shows no mass lesion. But in other cases, the decision to do the tap is based primarily on the need for additional diagnostic information or where there is a question as to whether the diagnosis is something other than Lyme. We have tapped about twenty-five [sic] patients so far. The majority have had normal spinal fluid findings. Usually, they have no elevation of their white cells. Protein and sugars are normal. Cultures are negative. Interestingly, however, at least fifty percent of them show increased pressure with opening pressures greater than 200, sometimes as high as 400. Every patient with papilledema has had a pressure of at least 300 or more except for one girl whose opening pressure was 260 but she had obvious papilledema and also loss of vision in her left eye. Eight of the patients had a pleocytosis with cells ranging from 60 to 700, predominantly lymphocytes. Only two patients showed a positive CSF titer.

I should add it was also true for DD. We have not tested younger DS yet but are treating him for mold. Our children are not fully biologically related and all have similar immune deficiencies inclusive of IgA. DD and older DS have transglutaminase IgA antibodies. I tend to believe some of this stuff is more environmental. The test is expensive at over $600 'I think' but it will be a life saver with regards to your PANS treatment if it is mold. Mold can create huge hurdles with recovery if not diagnosed. Thankfully our children moved slowly toward recovery even with mold issue..... However, I have greatly improved since moving and older DS's cough is almost non existent. We think the mold was definitely in his lungs as well as liver. Recently he has had slightly elevated liver enzymes.

You need to to check for mold via the Real Time Labs Mycotoxin Urine Test...... It can raise the transglutaminase IgA antibodies and the individual appears to be Celiac's. This was true for our older son. We are not currently Gluten Free because we were chasing food allergies possibly from the mold related issues. Now, we are just treating for mold. Here is a little blurb on the topic. 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.eWSqcZAZ.dpuf

I really appreciate your post. We too never thought we were dealing with Lyme until we had antigen and PCR matches 'positive results'. We went to great length with our testing to prove Lyme. I was also convinced we were not dealing with mold. Kids C4A's were normal, we had touch/fixed everything top to bottom in our home 5 years ago, etc. I was very wrong and our older son's mold results were sky high comparatively. For us, it was so much more. However, with each intervention we are closer to our goal of recovery for our entire family. Nicklemama I can not say its been an easy treatment process and that I immediately felt better..... it took time. However, 4 years later I am off antibiotics, gained my spirit back, can be present to our children after 4 p.m., practice yoga 4 times a week and feel better than I have in years. I have been slightly symptomatic for 15 years and those symptoms worsened with each pregnancy and later with each illness and mold exposure. For those that don't live in endemic areas and do not remember a TICK bite, I thought I would post the most recent study regarding sexual transmission out Jan. 27th, 2014. Both my DH, I grew up in endemic areas, both had tons of exposure, my husband was only slightly symptomatic and was easy to treat with herbs and anti-parasitic. I was not symptomatic until I met him. http://www.researchednutritionals.com/information.cfm?id=292

I have heard great things about Envita in AZ. I am not sure if you have checked for Lyme yet but I think they can help with extensive testing. http://www.envita.com