sf_mom

If your child has Myamotoi Borrelia it would NOT have come up positive on standard Lyme test. It has different proteins and not testable at this time. Borrelia Spirochetes can be sexually transmitted and also passed from mother to child in-utero. We have 3 children with gestational Lyme et al PANS/PANDAS/Autism. I PM'd you a list of Dr.'s. One is located in Santa Barbara for you plus some really good Dr.'s/NP's in Bay Area. 2 of the NPs listed have children with PANS/PANDAS. Look in upper right hand corner for PM message.

Your child's Periodic Fever Syndrome as a toddler has me concerned there are other potential infections involved. Many of us found that although strep was an obvious trigger there were other underlying infections or viruses. Borrelia Miyamotoi is the more predominate TBI (tick born infection) in CA and is not testable via any standard Lyme test. Borrelia Miyamoti is also known to cause relapsing fevers. Here is a little blurb and you can google Borrelia Migamotoi Relapsing Fever for more references. Borrelia miyamotoi is a relapsing fever Borrelia group spirochete that is transmitted by the same hard-bodied (ixodid) tick species that transmit the agents of Lyme disease. Tick Study in CA: http://www.bayarealyme.org/about-lyme/what-causes-lyme-disease/borrelia-miyamotoi/ http://www.cdc.gov/ticks/miyamotoi.html I would highly recommend seeing an LLMD (Lyme Literate Dr.) that understands PANS/PANDAS to investigate further for your son. We have wonderful LLMDs in Northern CA that are very well versed in PANS and/or PANDAS if you are willing to travel. Please PM via the forum for referrals. Does your child have a known tick bite at any point in his life?

The way we qualified for Selective Immune Deficiencies was to track our children's IgG Subclasses over time. Every two or three months we tested CBC, CMP, Subclasses 1 to 4, Total Serum, IgA and IgM. Over 1 to 2 year term we had regular testing that showed their subclasses as deficient and dropping in all categories. DD had very low immune function. We have a team of Dr.'s that all have in-depth knowledge of Lyme et al..... so, we divided approval amoung Dr.'s. Our DD has a pediatric neurologist, an integrative LLMD, an integrative Dr. that specializes in Autism. Our neurologist submitted for approval, our LLMD currently oversee and prescribes. We also have a local immunologist that would have prescribed IVIG for Selective Immune Deficiencies and a recommendation to that immunologist from her other Dr.'s. All her Dr.'s agreed she needed IVIG. She also just had a peer to peer review and qualified for extended treatments as her immune function is still low even after 2 years of IVIG treatments every three weeks. You can purchase DHEA over counter at 5 m.g. Our LLMD prescribed compounded version at 2.5 m.g. and she currently weighs 69 pounds. I would highly recommend you test your DD for immune deficiencies as her % are indicative of an inability to thrive. I think she could be helped tremendously if she is deficient.

DD was in the 7% for weight and at one time her Dr.'s would have classified her with an inability to thrive. The thing that has helped her the most with proper growth is IVIG for Selective Immune Deficiency. She is currently in the 59% for weight and 71% for height. We also put her on a low dose of DHEA. It is a regulating hormone and children with chronic infection are often depleted due to adrenal fatigue. A 'very' low dose has definitely helped her grow. She has put on some weight recently in preparation for another growth spurt. Our older son had also not put on weight for almost 2 years. Similarly he was treated for Selective Immune Deficiency and is now in the 64% for weight and 95% for height. He is also on low dose DHEA.

Congratulations on your children's recovery and enjoy every minute of your vacation. Yes, you can ADD Rifampin to current antibiotic protocol. Our children have been on the same combination in the past along with IVIG for Selective Immune Deficiency. One thing you should be aware of regarding Rifampin........ you should not stop and restart for brief periods of time. So, if you start taking it...... take the entire 5 weeks you are away.

Here is a great blog post about it. http://www.betterhealthguy.com/regenerative-cryotherapy Of the 15 antibiotics you have been on where they ever in combinations? Did you test for Babesia as it is often associated with depression and requires an anti-malarial. OR, have you tested for MOLD?

I recommend watch the movie UNDER OUR SKIN.... It will help to get you up to speed quickly on Lyme. http://www.underourskin.com/#home-underourskin

Chronic Lyme is often misdiagnosed as Lupus, MS, Chronic Fatigue, ALS, Parkinson's and Fibro. I probably picked up Lyme as child camping with my family in Northern MN. I only had a handful of minor symptoms prior to pregnancy that were not bothersome i.e. night waking between 3 and 4 a.m. During and after pregnancy more and more symptoms developed. In my second pregnancy with twins I broke out in a full body rash that our OB thought was PUPPS. I also had edema with only trace proteins at the time. To help with the intense itching from rash my Dr. prescribed steroid shots every other day. After starting steroids, my blood pressure skyrocketed and I develop mild regular seizures of about six a day. As a result of my bad state.... about 10 days on steroids shots my twins needed to be delivered. Pregnancy and other stressors like vaccines, illnesses, broken bones, surgeries are known to kick off Lyme symptoms. It is thought the immune system was probably keeping things in check until these life events happened. Most LLMDs have experience in treating PANS/PANDAS or Lyme induced Autism symptoms. Where do you live?

It is very possible your son has PANS. His issue since birth indicates he might have picked something up from you in-utero or via breast milk. All three of our children have gestational TBI 'Tick Borne Illness'. They are diagnosed with three specific TBI infections: Lyme, Bartonella and Babesia. Two of the infections are known to pass gestationally from mother to child and via breast milk: Lyme and Bartonella. Our older DS appeared to have classic Pandas (later diagnosed with PANS) while our other two children had similar symptoms to your son and had spectrum issues. Our DDs language regressed at 2 after MMR. All three have been successfully treated for PANS - six years now. Do you have a known tick bite or any obvious health issues? Do you have or had a household cat? Bartonella is often transmitted by a cat scratch and is referred to as 'Cat Scratch Fever'. My symptoms were pre MS - Fibromyalgia like in nature.

Night sweats and low grade fevers are a strong indication of Babesia. Our children only a few symptoms of Babesia of occasional air hunger, night sweats, flushing, low grade fever or temperature intolerance and are very responsive to treatment. Perhaps a trail of anti-malarials would help.

Bay Area Lyme Foundation will test your tick for free. They test for 6 different pathogens but not Bartonella and Babesia. Here is all the information. http://www.bayarealyme.org/lyme-disease-prevention/tick-testing/

Your son's story seems so similar to our own son's story at age 5. You have fantastic motherly instincts and you need to continue your pursuit of underlying cause of TICS, nightmares, urinary frequency, etc. My son's PANS was triggered by MMR booster and strep related illness. He too started with a neck jerk, ear flicking, dilated pupils, frequent urination, mild OCD of hand washing and sudden separation anxiety when dropping at school or camp. He is now 12 years old and no one would know he ever suffered from PANS: very bright, thriving in school and playing competitive sports. We eventually discovered our underlying issue was chronic Lyme et al and not just strep. Strep was an obvious trigger along with the vaccine. My son's Lyme is gestational, he got from me in-utero. My symptoms where mild prior to pregnancy.... Fibromyalgia 'like' symptoms after pregnancy. I know your heartbreak. I also know you can and will sort this all out to help your son.

Me too..... living proof that long term antibiotics were extremely helpful to my recovery from chronic Lyme. I probably picked up Lyme as a child. Tons of tick exposure growing up in MN and camping with my family. 3 years of treatment, almost 3 years in remission. I am healthy, healthy, healthy and leading a normal life again. I do a lot to keep things in remission but do not need ongoing antibiotics. My symptoms were MS/Fibro like: mild seizures, headaches, joint pain, tremors, fatigue, etc. ALL GONE. All 3 of our children have also had amazing recoveries and have been on long term antibiotics. Treatment has saved their lives and reversed all spectrum systems for our 8 year old twins and all PANS symptoms for our 12 year old son. It has been a long path to recovery but our kids are thriving! I am enterally grateful to the Dr.'s that were willing to treat our children with long term antibiotics.

I just wanted throw parasites into mix.... especially rope worms, tape worms, liver flukes, etc. The gut health will never improve if parasites are present. They truly grab vital nutrients and cause there to be very little absorption. They are extremely difficult to test for even with comprehensive stool analysis and treatment requires long term diligence. Successful protocols: ozone insufflation, coffee enemas, IV Ozone, herbs. The only way I discovered rope worms was via large volume coffee enemas. 1 1/2 years later I am still treating. Obvious symptoms: Dark circles under eyes, inability to thrive, inability to lose weight, weight gain, anxiety, nail biting, poor gut health (no absorption), constipation, slow transit or the exact opposite, etc. I also strongly agree with what LLM has stated so eloquently about auto-immune disorders.

Type of headaches seems like Bartonella. Cycle seems like Babesia. Are you still doing ART with him? Some herbs would knock it down if you are targeting correct infection.

Where is the headache located.... base of neck, shoulders, behind eyes? Or, are they spiking headaches? Or, are they sinus headaches? The 10 to 11 day cycle makes me think Babesis. Was he worse over the last couple of days? Full moon was the 23rd and would also point to Babesia depending on type of headache or course.

In the Lyme world regular bloody noses are associated with Bartonella.

There are also other infections that reside in the nasal passage chronically and wear down the immune system. You can do a nasal swab to determine possible source. MARONS (Staph), Staph, Mold, Yeast, Strep, etc. Molds and yeasts are not detectable via nasal swabs. Parasites are also known to get into nasal passage and then into brain. Our LLMD (Lyme Literate MD) would argue many of the above can get into the brain via nasal passage. Your inflammation, headaches, aches and pains combined with your DD symptoms make me wonder if there has been mold exposes in the environment at school or home? Also do you live in a Lyme endemic area? Have either of you been bite by a tick?

LLM said it all so well that I have very little to add. I too believe the short term use of steroids or longer term small dose steroid can be extremely helpful for reprieve. Things I would have done differently: Checked for mold earlier in our treatment process Considered alternative therapies sooner: Oxidative Therapies, PK Protocol, etc Utilized pulse therapies sooner: Need to train the body to fight infection on its own Sometimes I ignored the obvious due to being overwhelmed, the costs associated with treatment, fighting insurance, treatment fatigue, etc. It all added up to a longer treatment timeline for our children For us antibiotics were very helpful. We also took multiple antibiotics, 2 to 4 at any given time.

All three of our children have gestational Lyme and are living normal lives. It was/is a long road to recovery when Lyme and co-infections are involved. We are in our 6th year of treatment. Our older son was initially diagnosed with PANDAS at the age of 5 1/2 years old and was treated for one year fairly successfully with PANDAS protocol. At the one year mark he seemed to be declining and had blood in his stool so we were forced to look beyond strep and found Lyme and co-infections. He just turned 12 and he is still being treated. He has no anxiety, no OCD, no rage, no mood issues, no depression..... none of the typical PANS symptoms for several years now. He still has a few symptoms that are non-dectable to average person, are more traditional Lyme symptoms and why we continue to treat. Not long ago we started pulsing Ivermectin one day a week at high doses with our 12 year old DS. Ivermectin treats parasites and Bartonella well. Within 48 hours of initial dose a classic Bartonella rash appeared on his back. Unfortunately, it is a rash I have seen often with rotation of protocols for all of our children. Our younger son just started the same protocol as his older brother 10 days ago. Also after 48 hours of starting Ivermectin he came downstairs from showering and asked me if it was right to have all these scratches all over his body. It looked like a cat had scratched him in several locations. It was also the same rash that appeared on older DS. After a second pulse of Ivermectin he had a 45 minute rage later in the day. The rage came on suddenly and stopped suddenly.... he could not quantify to me why it had happened. This particular child had not had a rage in years. In the Lyme world rages are often associated with Bartonella and what we were treating. The only reason why I mention our story is for perspective on how long it can truly take to treat TBI chronic infections. Even after 5 - 6 years of treatment we have real physical indications the infections are still there in more than one child.

Ticks carry much more than Borrelia. As you are probably know ticks can also carry: Bartonella, Babesia, Mycoplasma and many more infections not even testable at this time. For example, Borrelia Miyamotoi is more predominant in Northern CA than Borrelia Burgdorferi and is not testable at this time. In my world, the 'Lyme World'..... always treat the bite. You can send the tick to Igenex as well and have it tested for Borrelia Burgdorferi, Bartonella Henselae, Babesia Ducati and Babesia Microti.

Since you are in the medical field you probably recognize the epitope test is a great confirmatory test for Lyme. I thought I'd recommend a few good books for both your husband and you to read. Understanding the disease will help you find a well informed LLMD and save you potentially a lot of time towards recovery. Unfortunately, a month worth of a single antibiotic use of Azithromycin will not effectively treat Bartonella. Here is great article on Bartonella: http://townsendletter.com/July2015/bartonellosis0715.html Couple good books: Why I can't get better. By Dr. Richard Horowitz http://www.cangetbetter.com Cure Unknown by Pamela Weintraub Any Stephen Buhner Book on Lyme and co-infections

The worsening for symptoms shortly an antibiotic rotation or IVIG has always indicated a die-off and clearing toxins for us (Herxheimer Response). We have 2 children that receive IVIG every three weeks for immune deficiencies. The increase in symptom includes any increase in psychiatric issues like: anxiety, manic - depressive behavior, OCD, TICs, etc. Have you checked your child for infections beyond strep? In our situation: Our son had TBI 'Tick Borne Infections' and no notable strep. His infections included: Lyme, Bartonella and Babesia. I would keep administering ibuprofen regularly, add anything to help the body clear toxins and symptoms should settle. It can take a couple days for things to resolve sometimes longer... child dependent.

I agree. You need to check your son for Lyme and TBI co-infections like Babesia and Bartonella. The difficulty breathing he expresses to you could be a real symptom called 'air hunger' and is associated with Babesia. Babesia is an inner red blood cell parasite and is treated with anti-malarials, not your typical antibiotics. I've attached a symptom list for both Babesia and Bartonella. Both infections can trigger OCD behavior. However, Bartonella is more typically associated with rage behavior and anxiety while Babesia is associated with depression. Our children presented with only a few physical symptoms at any given time. Some children only have neuropsychiatric symptoms and no physical symptoms at all. I am attaching a link that has great description of 'air hunger'. http://suzycohen.com/articles/lyme_babesia_treatment/ Babesiosis Chills Fatigue and often excessive sleepiness Night sweats often drenching and profuse Severe muscle pains, especially the large muscles of the legs (quadriceps, hamstrings, buttocks, etc) Neurological symptoms often described as "dizzy, tipsy, and spiciness," similar to a sensation of floating or of walking off the top of a mountain onto a cloud Depression Episodes of breathlessness, "air hunger" and/or cough Decreased appetite and/or nausea, perhaps vomiting Spleen and/or liver enlargement Laboratory abnormalities that may include low white blood cell count, low platelet counts, mild elevation of liver enzymes, and elevated "sed rate" Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas) Less common symptoms are joint pain (more common with Lyme and Bartonella), anxiety and/or panic attacks (more common with Bartonella), lymph gland swelling (more common with Bartonella and Lyme), non-specific "sick feeling" (also encountered with Bartonella and Lyme) Dark urine Enlarged lymph nodes Significant memory changes Struggle organizing Profound psychiatric illnesses Significant fatigue, daytime sleep urgency despite nighttime sleep Waves of generalized itching Balance problems with dizziness Severe chest wall pains Random stabbing pains Weight loss Sensitivity to light Sleep in excess of 8 ½ hours per night Sore throat with unproductive cough Bartonellosis Fatigue (often with agitation, unlike Lyme disease which is more associated with exhaustion) Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus" Headaches, especially frontal (often confused with sinus) or top of head Eye symptoms are common and include blurred-vision episodes, red eyes, dry eyes, depth perception problems, retinal problems, and light sensitivity Ringling in the ears and sometimes hearing problems (decreased or even increased sensitivity known as hyperacusis) Sore throats that are recurring Swollen glands, especially neck and under arms Anxiety, panic, or worry attacks; others perceive as "very anxious" Agitation, irritability, rage, impulsivity, or aggression Episodes of confusion and disorientation that are usually transient (and very scary), often can be seizure-like in nature Poor sleep (especially difficulty falling asleep), poor quality sleep Joint pain and stiffness (often symmetrical, as opposed to Lyme which is often unsymmetrical and often migratory) Muscle pains, especially in the calves; may be twitching and cramping also Foot pain in the morning involving the heels or soles of the feet (sometimes diagnosed as plantar fasciitis) Nerve irritation symptoms that can be described as burning, vibrating, numb, shooting, tingling, and so forth Tremors and/or muscle twitching Heart palpitations and strange chest pains Episodes of breathlessness Strange rashes recurring on the body, red stretch marks, peculiar tender lumps and nodules along the sides of legs or arms, and spider veins Gut symptoms, especially acid reflux Shin bone pain and tenderness Fainting Bladder pain, irritation, infections Genital disorders Obesity and body swelling The list of Borreliosis, Bartonellosis, and Babesiosis symptoms were borrowed from Joseph Burrascano, M.D. (Checklist for Lyme Disease 2008), Kenneth Singleton, M.D., M.P.H. (The Lyme Disease Solution 2008), and James Schaller, M.D. (Bartonella: Diagnosis and Treatment 2008 and The Diagnosis and Treatment of Babesia 2006)

With "stomach cramp like pain" perhaps run a comprehensive stool to see if she has picked something up. They can be very helpful in other ways as well........ like, how much gut absorption, good bacteria, yeast issue, etc. DHEA and Pregnenolone are both hormones that act as natural steroids and help those with adrenal fatigue. Again, her age makes me think there is an imbalance in her levels. I would try and push your Dr. to test her hormone levels.... especially, her growth hormone levels (DHEA). I agree with other that POTs and adrenal fatigue are related to Lyme et al. Dizziness, fainting specifically Babesia