sf_mom

I am curious.... Do you remember a tick bite? If so, when did the OCD start in relationship to the bite. Many of our children have chronic Lyme. In our situation, our older son PANS was trigger by several events: annual vaccinations, strep illness and virus in three week period. He has been treated for Lyme et al for the last 4 years and his OCD has been mostly non-exsistant for several years. I am also curious of your course of treatment over the last 12 years and was the OCD minimal while undergoing treatment? Do you still have some of the traditional symptoms of Lyme et al? Depending on which Dr. you talk with some believe it is parasites that drives the OCD, some believe it is the combination of bugs, some think it is bartonella, some think it is just autoimmunity, some think it is strep. I tend to believe it is all of the it. By the way 2,000 m.g. of Augmentin would not be enough to treat for your probable size and weight. I have taken 4,000 m.g. of Augmentin per day and suspect I am much smaller than you.

Our older son was neurotypical until PANS at age 5 1/2. He was only on antibiotic once prior PANS at age 4. Strep, annual vaccinations and a virus all in a three week period triggered his cascade that lead to PANS. He too had multiple issues: chronic infections/viruses: Lyme, Bartonella, Babesia, Coxsackies, HHV6, yeast, biofilms, heavy metals, mold, vitamin/mineral deficiencies, methylation/detox issues. We did not find anyone thing to be the panacea with regards to treatment however all of it added to his overall successes. To most he appears to be a perfectly normal child. To us, he has maintain a 90% baseline or better for the last couple years. His symptoms today are predominately physical in nature: not feeling well, headaches, etc. If chronic infections like Lyme is involved it can be a long rocky road to recovery. We believe he will 'now' live a normal life. I learned way more than I cared to about medicine. It can be a full time job but we have 3 sick children. Things that help us get to where we are with older DS 3 HD IVIG - Responded well but could not maintain recovery then discovered chronic infections Steroids - Helped but since he is dealing chronic infections we have not used them since initial onset Testing extensively for chronic infections/viruses Combinations antibiotics Understanding his methylation issues, detoxing abilities Yearly comprehensive stool analysis Yearly vitamin/mineral/amino acid testing (now testing every 6 months) Addressing gut issues as best we can while on antibiotics IV vitamin/minerals Ozone Therapy - We feel this has really gotten at the biofilm issue Healing time I am sure I left a few things off the list. One thing we did not do was remove his tonsils.

MOLD!! We had an unfortunate event happen this last summer. A 150' pine tree fell on our house and took down an old growth oak with it. There was extensive structural damage to the home. When the tree fell it brought a plume of debris through the house and we definitely noticed a immediate change in our younger DD and a mild slow regression in older DS. We weren't sure if it was the stress of the event or the toxic debris. When we started investigating the damage to the home by pulling off the roof and siding we found behind the walls both white and black mold. The smell of the house changed instantly when the tree fell and has not abated. Thankfully, no one was hurt, we were well insured so our insurance paid to have the house environmentally tested. We had it all: lead, asbestos and now high concentration of Trichothescene (black mold) especially in the rooms that were impacted. 500 times more concentrate in the bedroom section verse living room. I mention all the above because at that point we felt we had to test all of our children extensively for mold. All three previously had normal C4A. We did the Shoemaker Panel and there was some indication that older DS might have a problem but not much... MSH was a little low and his TGF-b1 was a little high. We also did the Mycotoxin Urine test by Real Time Laboratories and they found our older son was positive for Trichothescene at 6.98, reference range .18 to .2. Same mold that was found in high concentration in the bedrooms that the tree impacted. We are now treating for mold. I highly recommend the Mycotoxin Urine Test. It is a little expensive but was well worth it. We are using the results as a baseline to determine detoxing abilities. I think with CD57s that low you really have to look at all angles. Another test that should be on your list is Nagalase (treating can help get the CD57 numbers up).

I think it is better if you test the blood cell utilization of B-12. There are two tests we did.... SpectraCell Vitamin/Mineral test (looks at inner white blood cell utilization) and the amnio acid testing by Dr.s Data. There is a big difference between what is being circulated in the blood and how the cells are utilizing the vitamin/minerals. We tested our DD's zinc both ways (serum and Spectracell) and found her to be severely zinc deficient in her serum and only borderline on SpectraCell. We are monitor zinc, copper, methylfolate, calcium, glutatione, etc. via Spectracell. We've done this testing once a year but because vitamin/minerals are so interdependent we are switching to once every six months. Its easy to become copper and calcium deficient if supplementing with Zinc/Copper. You should be supplementing at a 1 to 8 ratio of copper/zinc. I think everything LLM mentions is important to try.... definitely address the methylation as best you can. However, I would still follow those supplement choices with regular Spectracell and Amnio Acid testing..... Sometimes due to LEAKY GUT these vitamin/minerals do not get absorb properly via the intestinal track and they go straight into the blood stream hence high level of serum levels. I also recently learned from our DDs neurologist that if your body is low on Amnio Acid it can not produce IgGs. Hence, immune deficiencies. DD is immune deficient. You can also understand how your son absorbs stuff via comprehensive stool and amnio acid testing. These test will definitely help you to regulate what is being utilized by the body.

Lyme is not always in the brain nor is it always autoimmunity. Lumbar puncture would not rule out Lyme. The Lyme might not be in the spinal fluid at the time of testing. I would google spinal tap and lyme. If I remember correctly your daughter is off antibiotics currently and you might consider doing the Lyme Culture via Advance Labs if you would like further confirmation of Borrelia. Low dose steroids have been a miracle for my friend diagnosed with Lyme who was suffering from Adrenal Fatigue. You might consider testing her adrenals & cortisol levels to see if that is an issue. If her cortisol levels are in over drive it could keep her up at night. Any Dr. you are currently seeing could help test her adrenal function. http://www.adrenalfatigue.org/cortisol-adrenal-function

Alpha Lipoic Acid can also cross the BBB when the dosage is 200 m.g. or more per day. If your child has a heavy metals issue, Alpha Lipoic Acid would start to move the metals out of the brain and potentially increase symptoms from re-equalization and dumping of metals. For us, in conjunction with understanding genetics/methylation/detox....... using the Spectracell Vitamin Testing has been invaluable. Spectracell looks at how the vitamins are utilized within the white blood cells. We knew our DD needed zinc as she tested low zinc, high copper not KPU. We started supplementing her with 30 m.g. of zinc per day (which is a lot). After about a year we did Spectracell testing for her again and as a result discovered the 30 m.g. of zinc wasn't enough. She is now on a much higher dose of zinc and her reading and attention abilities have changed DRAMATICALLY. FYI: If you supplement with high doses of zinc you should watch copper/calcium levels to ensure they stay within proper range. High levels of Zinc can impact copper/calcium absorption.

The swollen Lymph makes me think Bartonella. The scalp sores make me think of FL 1953? Fry Labs does a protozoa panel and included is the FL 1953. Even if the sores are culturing positive for strep, I would think his inability to eradicate the sores might indicate there is something else in combination to the strep. The FL 1953 is a parasite and antibiotics alone would not treat. You would need to treat with an anti-parasite like Alinia, Biltriside, Invermectin and perhaps with topical anti-parasitic ointment. It is a biofilm forming bug and would not resolve if only treated topically. Our older son had scalp sores at on set. He was treated with Alinia for a long time (sores resolved). We have not tested him for the protozoa. From BioResource 2012 - Symptoms of FL1953 are similar to Babesia. Symptoms include cold hands and feet, headache behind the eyes, scalp sores, sinus congestion, notable teeth pain, heart palpitations, shortness of breath, dry cough, abdominal pain, nausea, IBS, insomnia, sweats, bladder pain, muscle pain, twitching, profound fatigue, exercise intolerance, insomnia, brain fog, poor balance, anxiety, OCD, irritability, hypercoagulation. Off and on hoarseness can be a symptom of FL1953. - FL1953 herxes can be massive body pain, headache, anxiety, paranoia, hallucination, irritability, twitching, fatigue, joint pain, tooth pain, congestion or sinus pressure, abdominal pain, bladder pain, and increased hypercoagulability.

Our older son who is 9 and 70 pounds is on it. He takes 250 m.g. x 2 daily. Biaxin is similar to azithro but considered stronger. Oops, I should have said 500 m.g. per day

You might check hormone levels and thyroid if you haven't yet. From ILADS conference 2013. Hypothyroid symptoms can be intolerance to cold, weight gain, dry skin, not being able to sweat, constipation, immune suppression, and low body temperature. - See more at: http://www.betterhealthguy.com/ilads-2013#sthash.qiryiwXt.dpuf

Our younger son had aneurysms at 5 1/2 months of age. He was cleared by his cardiologist at 18 months. He started antibiotics at 2 1/2 years of age for PANS. At 3 1/2 years of age we discovered his PANS was triggered by chronic infections and viruses. He has been treated non-stop since with antibiotics for several infections and viruses that can impact the heart: Coxsackies (very high titers), Bartonella and Lyme. We believe the Bartonella, Lyme and maybe even the Coxsackies were passed to him in-utero and the heart related issues are connected to his chronic infections/viruses. He is now 6 1/2 years old, still on antibiotics and thriving. We saw our cardiologist at about 4 years of age and we did not find her to be a PANDAS/PANS believer or that the two might be related. Our Lyme Literate Dr. 'LLMD' does understand the heart/infection connection and will most likely see a different cardiologist that is referred by our LLMD for his next follow-up. Chronic Strep, Lyme, Bartonella, Coxsackies can all impact the heart. I would spend some time googling the relationship. You might also checked for specific infections with your PANDAS/PANS Dr.

We have seen vast improvement in dyslexic and/or ADHD since treatment for Lyme et al. At one point, our son wrote his name perfectly in a mirrored fashion (if you held his hand writing on a paper, up to a mirror, it read perfectly). Currently, all ADHD is resolved, handwriting is OK and occasionally still reverses Bs and Ds or 6s and 9s, is 9 years old, 4th year of Lyme treatment. A couple of things contributing to possible ADHD symptoms: Yeast, Parasites, Mineral Deficiencies, Heavy Metals and based on our experience 'Bartonella'.

At the most recent ILADS conference Dr. Katz from CT spoke about how helpful IVIG can be for those suffering from Chronic Lyme et al. You might consider consulting via phone or purchasing his talk from ILADS. I know he also does spinal taps looking for specific markers prior to IVIG but I can't remember what they are (not infection). Prior to treatment, I would also talk with your LLMD about doing mycotoxin urine test for mold and test your son's Nagalase. Elevated Nagalase can cause immune dysfunction and mold toxins are a huge stumbling block when treating chronic Lyme. With mold it is important to test the individual not just environment because the exposure could be coming from anywhere: home, school, work environment, etc.

In the beginning of PANS for our family I used to consider myself a poop watcher. I have seen it all, blue, gray, green stools.... Here is a good explanation of pale or gray color. Pale StoolStool that is pale or grey may be caused by insufficient bile output due to conditions such as cholecystitis, gallstones, giardia parasitic infection, hepatitis, chronic pancreatitis, or cirrhosis. Bile salts from the liver give stool its brownish color. If there is decreased bile output, stool is much lighter in color. Other causes of pale stool is the use of antacids that contain aluminum hydroxide. Stool may also temporarily become pale after a barium enema test. Pale stool may also be shiny or greasy, float, and be foul smelling, due to undigested fat in the stool (see soft and smelly stool).

I am in Northern CA and have twins with spectrum issues/PANS. One lost most of her language ability at 2 1/2. You are welcome to PM (upper right hand corner) to see if I recognize any of the Dr.'s you are interested in seeing. Our children's pediatrician is at Whole Child Wellness, our DD sees a neurologist at My Brain Health and they all see an LLMD.

I was just reading about this: "I read another conference (different site - looking for link) where Dr. Fry talked about FL1953: He said that those with FL1953 are often Vitamin D deficient. And that most with it, when they take Vit D - will feel sicker. That until the Vit D levels get higher, they feel sick when taking Vit D." You might also think about testing Nagalase as well.

I think your lack of improvement is telling. If I remember correctly you are in the Bay Area. Since he had slight improvement from prednisone there is obviously an inflammation issue. Have you ever seen Dr. Raj Patel? He is really versed at testing inflammation markers and potential underlying cause. He is also skilled at treating Lyme and has many PANS children. He can help decipher if Lyme is still an issue or if its the inflammation from some other source. The degree IgG titers are elevated and directional movement (hopefully down) when treated is critical when determining past or current infection. For example my mycoplasma IgGs are 2.75 but have dropped since treating for Lyme. I am hopeful they will eventually fall within a normal range.

There are plenty of good Dr.'s in Bay Area that understand PANS/PANDAS and can help. Unfortunately, the most skilled at treating are not at Stanford or UCSF. We used to live in the city and at the time tried to educate our pediatrician, saw a non believing immunologist at CPMC, spoke with movement disorder specialist at UCSF (he helped with directing us toward PANDAS/PANS diagnoses) plus went to Stanford. Most could not help us or treat. We now live 2 miles from Stanford and do not see any Dr.'s there due to lack of experience treating. Our older son had his sudden on-set at 5 years of age after annual vaccinations, strep related illness and virus within 3 week period. He is now well and is 9 years old. Here is the short list for the Bay Area: Dr. Lynn Mielke in Pleasanton: Developmental Spectrum Disorder (best initial evaluation with blood work) Dr. Julie Griffith in San Rafael: My Brain Health Dr. Raj Patel in Redwood City: Medical Options for Wellness Dr. Elisa Song in Belmont: Whole Child Wellness (If Dr. Song is not accepting new patients I understand Dr. Chandra is just as good) Dr. Sunjay Schweig in Petaluma: Hill Park Medical Center There are more treating Dr.'s with specific specialities but the above list is a good start.

Your son's Lyme result are 'suggestive' of infection based on Lyme specific bands on result. Additionally, sensory issues are a common symptom of Lyme and its very possible he has had it for while and his immune system was keeping it in check until Flu Mist (both our twins have Lyme and had sensory issues). It also looks like he has/had Mycoplasma and possibly Strep as well. My Mycoplamsa titers are currently 2.74 and I am being treated for active infection along with Lyme. The results you listed for Ehrilchia, Anaplasma or Babesia Duncain are hard to interpret based on what you posted. If memory serves me well anything > 1:20 result indicates there was something there. PCR testing for co-infection is like finding DNA and the type of testing you did.... explanation below. "The polymerase chain reaction (PCR) is a biochemical technology in molecular biology to amplify a single or a few copies of a piece of DNA across several orders of magnitude, generating thousands to millions of copies of a particular DNA sequence" Results are always overwhelming and know over the next couple of weeks you will get a comfort level for what they mean. I am sure speaking with your LLMD will help clarify your understanding. Additionally, if you would like further confirmation of Lyme and since your son is not currently on antibiotics, I highly recommend testing with Advanced Labs. It is a culture test (doesn't look for antibodies) and will provide you with a picture of the spirochete if positive. Dr. B is also very versed in treating kids with both PANS and Lyme with good success. I encourage you to keep your appointment with him.

Most people I know that suffer from this type of headaches and have babesia often get them daily. For me it was typically later in the day starting at around 2:00 p.m. My headaches were followed by moodiness and fatigue. The headache made it difficult for me to hold my head up. Thankfully most of these symptoms have subsided.... I no longer have the fatigue but do occasionally get the specific headache. I am considered to still have Babesia due to continued deep thigh bone pain, dull pain on top of my head and the infrequent headache at base of skull. Spiking headaches are more Bartonella. Dull pain behind eyes is Babesia and spiking pain behind the eyes is Bartonella. I should add that even those these symptoms can indicate a specific Tick Borne Infection... I do believe other infections, viruses or parasites can also cause similar symptoms.

Glad to hear he is better today and hopefully his 3rd round will provide even further gains. I have heard PEX being helpful for those infected with Babesia, makes sense since its a inner red blood cell parasite. It also sounds like the order of treatment has been good starting with detoxing mold. I recently heard Klinghardt is now recommending a 1 1/2 years treatment timeframe for parasite so something you might want to revisit in the future. As you probably know the itchiness is definitely a symptom of Lyme. I highly recommend the Advanced Labs Lyme culture down the road. Lyme may not be predominate issue (mold can be just as horrific) but you will want to know if its still there.

I agree, extended herx from reactivation. He is also immune deficient inclusive of IgAs and waiting to see if his subclasses turn around with treatment.

I am sorry you are experiencing a rough patch with treatment and remain hopeful you will make some gains after PEX is fully complete. When you are post PEX (several months) and if he is still worse or not improved as hoped you might consider testing with Advanced Labs for Lyme. Its a culture test, 'not antibody' and will provide an actual picture of the spirochete if positive. Many with questionable antibody results, told the Lyme was gone or it was a past infection have tested this way to confirm one way or the other. Our LLMD uses the test to confirm if there is a relapse occurring. I have chronic Lyme et al, all three of our children have gestational Lyme. One child is positive for everything including co-infections. One child is positive via antigen urine testing 'DOT BLOT' but serologically negative via Igenex test. One child is serologically negative for everything but has other indications of chronic infections/viruses: Low white/red Blood cell count, high Lymphocytes, inflammation markers indicating infection, etc This particular child is also very immune weak and has deficiencies in all her subclasses inclusive of IgAs of 21. She is unable to mount an antibody response and probably why results continue to remain negative but has improved tremendously from treatment. Her twin brother is the one who is positive for everything and has a much healthier immune response. We are in our fourth year of treatment and doing tremendously better but all of us still have a handful of symptoms and the Lyme is not gone. Based on your son's history/symptoms and comparing our own recovery it would have been extremely difficult to achieve full recovery from chronic Lyme within a seven month period. Also a a single use antibiotic is not standard when treating..... is your LLMD directing antibiotics currently?

Just wanted to update as well. My friends son started GcMAF shots in September. By the first week in Oct. he seemed much worse. He could not socially integrate, had restricted eating (went from 72 pounds to 64 pounds), wouldn't look anyone in the eye, was extremely tired, compulsively biting the skin on his feet, etc. It was very worrisome to see him in that condition. However, I just saw him this past weekend and he was 80% better! He still had some fatigue after his weekly shot, mood switching when tired but is now 66 pounds and his appetite is back. Amazing turn around.

A friend diagnosed with Lyme and treated for over 3 years is on a daily low dose of steroids for adrenal fatigue and it has really helped her get a leg up on recovery. I was given steroids for 2 weeks while pregnant with twins when I unknowingly had Lyme. The steroids triggered daily seizures and my blood pressure sky rocketed. The twins were delivered early as a result of my condition. After the twins were born, it took several weeks for these symptoms to resolve. Our older son who is diagnosed with gestational Lyme had good result from 5 day steroid burst but like others his symptoms returned within a few weeks. I think it can be a very mixed bag with steroids and chronic infections. However, I would closely document any symptoms that crop up during taper to report to your future LLMD like nauseous, dizziness and headaches. Also ask your son what type of headache it is and where it is located. For example, is the headache at the base of his head, near his eyes, near his forehead, is it spiking pain or generalized pain. The particular type of headache might help your Dr. determine if he has a co-infection and what type. The symptoms you mention are indicative of Babesia, a common headache with babesia is a headache at the base of the head in the back.

It is a similar battle for us 'YEAST'! We are/were also on Diflucan and nystatin as a family. I recently read that yeast can even become resistant to Diflucan. The only thing that has worked for our older son and myself is ozone therapy. It has brought huge resolution of symptoms for both of us. Insufflation will run about $60.00 per treatment depending on Dr. Insufflation is ozone blown in ears, nose or rectally. I had a chronic sinus issue for well over a year that has resolved due to these treatments. Often yeast/fungus gets in the nasal cavities and causes what looks like allergies or sinus infection. I am off antibiotics now due to ozone therapy and believe older DS is not too far behind me. Here is a list of Dr.'s if this type of therapy interest you. I would not go to a Dr. that is not well trained in ozone. You can read on-line how it works for yeast/fungus. http://www.oxygenhealingtherapies.com/my_ozone_doctor.com.html Here is another interesting website on yeast that is often referenced. I have not tried any of their recommended products but will if needed. http://www.candidaplan.com/new/what_is_candida/ To re-establish gut flora definitely continue with a rotation of different stains probiotics and bone broth. Here is a good explanation of why bone broth is helpful to healing the gut. http://www.thepaleomom.com/2012/03/health-benefits-of-bone-broth.html Yeast can also be tied with heavy metals. If you have not checked for heavy metals it might be something to consider.