philamom

Yes, you need to be off abx for at least 4 weeks. Let's face it $595 is a lot of cash. I don't think everyone should run out and get this test, especially since lyme isn't the only infection that causes PANS symptoms. I only wish it was covered by insurance so it would be an option for anyone with symptoms. I just submitted it to our insurance. I will post if I get any reimbursement.

Ifran- maybe I can find that video on youtube to show dd (lol). The wristbands I purchased don't help. There is a brand that was posted on a previous post here that I'm going to order- worth a shot.

Thank you - excellent strategies. I will also try to find more info on drexel. I really appreciate you sharing!!

I'm sorry your son is so sick right now. Please don't feel like an outsider and if you don't get a response right away - bump up your post. I ran the test on my daughter, which was positive. Feel free to ask any questions on it. Here is the contact information to request the test, if desired. You need to have a physician order it for you. Advanced Labatory Services 855-238-4949 info@advanced-lab.com The test is not covered by insurance, but you can submit the claim and try and get some reimbursement (depends on your insurance). The cost is $595.00 and it is a culture test (not antibody test). They have a requisition form on their website you can take take to your doctor for his signature. They will then send the blood kit to your doctor. The press release gives more details (it's in another post here). Hope that helps some. Please ask any questions you may have.

Thank you LLM. I'll try the stupid fairy today. I just wish the fear outweighed the actual nausea. In the beginning, she was working on fighting the fear - pushing to go somewhere to receive a reward at the end. She knows (well at least at that time) she needs to face the fear head on or it will get bigger. But when the car starts moving she becomes extremely nauseated (vertigo like) and her face becomes pale white. I feel if I push too hard, she will either vomit or faint. I feel like I'm putting her on the tea cups and telling her she needs to endure it. I hope I'm not making excuses. I guess I need to find the balance between the fear and the actual sickness and push through. I need to get her to doctors. Thank you - love reading examples - very helpful.

I just read my post again. I apologize it came off rude, it was not my intent at all. I'm just a little tired - not sleeping well. I was hoping maybe you (or anyone) could help with some examples/suggestions on how to address it with ERP until I get my daughter to see a psychologist or find one to come to the house. Her nausea and GI complaints started in Sept. when she was taken off antibiotics, and have since gotten worse. On Dec 31st, it became really bad and that's when she stopped leaving the house. I spent all of last week waiting for daily phone calls from doctors (y'all know the drill) that either didn't happen or came at the end of the day. I couldn't work on getting her out of the house untill after the phone calls because I needed the privacy to speak. You now what happens if you miss a specialist call - and it can come any time between 9-7 So didn't get to work on getting her out of the house. The last two days she was put on meds in an attempt to get her to Dr. B, but they just made her loopy and more nauseated -and her fear is too strong. So the ERP begins today. I have gotten her to take short drives in the car (which two weekends ago was not do-able). Now I need to get her to walk into stores. I think the best approach is to have my husband come and help force her to walk to the door (or half way there), and try and push forward from there? I can't do it alone because when she becomes scared with the fear/flight reaction, I don't have the strength to force her. Is this an ERP I can work on until she sees someone? If she vomits when we're trying this, is it a step she needs to go through in order to help overcome the fear? The last time she vomited was two years ago, and maybe two or three times when she was younger. When she was younger, she vomited (projectile) in a dry cleaners, which caused a strong reaction from the workers, and myself unfortunately (this was before PANS). Would welcome any suggestions? Thank you! Also- still working on the medical part of all this. Her lyme is still active (new borrelia culture shows this), she had elevated Dnase since Sept - just recently went back down in 200's, she has elevated ANA, sed rate, c-reactive protein, and other abnormal labs we are trying to figure out.

Thank you.

Yes, P.Mom - thank you for sharing.

She had this same problem two years ago, where it took us three months to get out of the house. Back then it was an extreme fear of getting into the car and vomiting. After a rotation with some antibiotics and a plan from a psychologist, we were succussful. But back then the abx helped with most of the stomach issues, so it was a little easier at addressing the fear part. She is not on medicine right now. When this started to rear its ugly head in Nov/Dec, we talked about vomit, sang songs, made jokes about it. But then her nausea got really bad and now she cries when you mention it. Her problem is she doesn't vomit - hasn't for a long time- except for one time, two years ago when she got sick in a cup in the car. That's what started the fear. I mention if she was a child who vomited a lot she would realize it s#@$ks, but not the end of the world. How can I apply ERP without the vomiting? thx

My daughter will not go anywhere there is people. She has severe nausea & GI complaints that gets really bad when in motion (car,exc). I'm working on her fear of vomiting by taking small drives with her each day to a store she would like to purchase something. Then we sit in the car while she cries because she can't go in. I even try coaching her to walk to the door and back to the car - but unsuccessful If I force her she goes in to fight/flight mode. I can't get her to any doctors. I can't get her in for tests. I can't get her to the psychologist. I'm sorry - just deflated right now.

Per Advanced Labs press release- "Culture postivity fulfills even the strict CDC Surveillance case definition" If positive- indicates infection was present at the time it was taken.

We had this NEW test done. My daughter's culture is positive.

I'm assuming you mean besides me - I haven't heard of anyone else runnning it. You (or your child) would need to be off abx for at least 4 weeks. My daughter received a positive culture. I should receive a hard copy soon which gives more info and a picture (or slide) of the borrelia spirochete. When I receive it I will post more details. I will also post if I receive any reimbursement.

ChristianMom- So, extremely happy for you!! Glad you got in sooner too. Please keep us posted. LadyJane- Tell them your situation if you cannot purchase all the supplements at once. Ask them to give you a list of the suggested supplements numbered by priority, that way if you decide to add some in between visits, you can call them and they will ship them out to you. Or you may find them cheaper somewhere else. I didn't find their products to be more expensive than online (course I didn't search too hard). It just adds up with the amount that are recommended. My experience with Dr. Schwartz was for myself, not my child.

The kyptopyrol (KPU) test can be ordered through Vitamin Diagnostics, Inc. You will need a doctor to order the urine kit for you, and then you collect it using the Klinghard method. Google Klinghardt & KPU or you can pm me for instructions. Call Vitamin Diagnostics 732-721-1234 - request a Test Kit order form, a Requisition Form, and a Price list, and take them to your doctor to fill out and order the kit. They will ship the kit to your doctor. The test is $70.

Thank you. I was on their website last night. I'm sure you probably saw this article but thought I would post it anyhow. I came across it when searching for info. Dysautonomia Disorders of the Autonomic Nervous System Aug 12, 2007 Elaine Moore autonomic nervous system - bewell.comDisorders of dysautonomia include familial and autoimmune disorders that interfere with the normal function of the autonomic nervous system. Autonomic nervous system (ANS) dysfunction, which results in a condition known as dysautonomia, includes several disorders that interfere with normal autonomic nervous system responses. The autonomic nervous system is responsible for the involuntary actions that regulate our heart, gastrointestinal, urinary, muscles, and bowel functions as well as our metabolic and endocrine systems. Endocrine responses include reactions to stress or the flight or fight response. Dysautonomia is also referred to as autonomic failure and autonomic neuropathy. Autonomic Nervous System The autonomic nervous system is comprised of sensory, enteric, and motor systems. The motor systems include the sympathetic and parasympathetic nervous systems. The autonomic nervous system transmits sensory impulses that it receives from blood vessels, the heart and other organs in the chest, as well as the abdomen and pelvis. It transmits these impulses through nerves to other parts of the brain, primarily the medulla, pons and hypothalamus. These impulses rarely reach our consciousness but they elicit automatic responses through the efferent autonomic nerves that cause appropriate reactions in the heart, vascular system and other organs. These impulses can result from stress, temperature changes, posture, food intake and other conditions to which the body is exposed. Dysautonomia Disorders Disorders of dysautonomia can result from both impaired and excessive functioning of the autonomic nervous system. Disorders in this family include Guillain-Barre syndrome, which is associated with vaccines, chronic inflammatory demyelinating polyneuropathy (CIDP), mitral vein prolapse dysautonomia, pure autonomic failure, postural orthostatic tachycardia syndrome (POTS), panic disorder, irritable bowel syndrome (IBS), neurocardiogenic syncope, multiple system atrophy (Shy-Drager Syndrome), chronic fatigue syndrome (CFS), fibromyalgia, and PANDA syndrome. Who is Affected? Disorders of autonomia may be familial or inherited or they may occur as autoimmune conditions. Dysautonomia may occur as a primary disease or it can occur as a secondary disease in people with other autoimmune disorders, alcoholism or Parkinson’s disease. Autoimmune dysautonomia is more likely to occur in people with other autoimmune diseases, especially autoimmune thyroid disorders, diabetes, and Sjogren’s syndrome. It can be triggered by infectious agents, for instance the development of PANDA syndrome in children recovering from streptococcal infection, and following vaccines especially in Guillain-Barre syndrome. Autoantibodies Autoantibodies seen in autoimmune dysautonomia include antibodies to the ganglionic acetylcholine receptor and anti-basal ganglia antibodies. Symptoms Symptoms vary depending on the specific disorder but overall common symptoms include dizziness, fatigue, motor function disturbances, blurred vision, depression, vague but disturbing aches and pains, headache, exercise intolerance, severe anxiety attacks, numbness or tingling, impotence, dizziness with standing or exertion, gastrointestinal disturbances, tachycardia, hypotension, hypertension and other symptoms. Symptoms may be self-limited and resolve over time or they may be chronic and progressive. Usually, a cluster of symptoms develops and the specific symptoms can change over time. Treatment Treatment depends on the specific disorder present. Treatment is usually aimed at alleviating symptoms such as pain medications or at suppressing the immune system, such as the use of intravenous immunoglobulin (IVIG) therapy in Guillain-Barre syndrome. Resources Dysautonomia, National Institute of Neurological Disorders and Stroke, National Institutes of Health, National Dysautonomia Research Foundation --------------------------------------------------------------------------------

Julie- so sorry to hear what your daughter is going through! Did they do the tilt testing while in the hospital or did you end up seeing a Cardiologist? I'm starting to think my daughter is dealing with some sort of dysautonomia (not as disabling). She is also homebound with severe nausea, GI issues, headaches, dizziness, gerd, trouble breathing at times, thirst, and temperature regulation problems.

I hate the line in the Buffalo News "We pretty much lifted every rock to take a look at things" WHAT???

May I ask what was the immunotherapy that made her worse? have you ruled out Celiac, Lyme, Addisons disease? sorry- just reread the post and saw where you mentioned LDA immunotherapy.

Very Nice!!

Yeah, it probably is a good idea to just buy the Core and give one capsule a try. thx

If Dr. B gets the approval for IVIG, you will have to travel to him, whether it be for one IVIG or every 8 weeks.

Thanks. I've tried a couple times in the past giving her a B-12 (5,000mcg) supplement. Even with one tablet she would herx, so then I would abandon it. If you recall, last week I couldn't do the KPU urine test because I accidentally was giving her Vitamin water. I don't usually purchase this much (because of the cost and sugar content) but I've noticed when she drinks it, she seems to be better (with PANDAS like symptoms). I never even looked at the ingredients until I checked to see if it would interfere with the KPU test. Well the ingredients are vit C, b3=b5-b6-b12, taurine-zinc-chromium. Maybe suggestive of KPU? Or just lack of vit/minerals in general? hmmm

He found highly elevated C3D levels initially, indicating a large number of immune complexes - meaning DS was either fighting a really bad infection or he was having an autoimmune response. He also found mildly low IgG numbers overall, but found that DS was deficient in 11/14 s. pneumoniae specific IgG levels (which made sense since he had chronic sinusitis). About 4 months later he found mildly decreased IgA as well - and we had to keep an eye on this before starting IVIG as IVIG can be problemmatic with markedly decreased IgA. 2. 1.5 Grams/ Kilo 3. We do live out of state and that was not a problem with our insurance. I would love to move IVIG to our home town for every other visit (we go about every 6-8 weeks). I have a local doc (psychiatrist) who is willing to write the orders, but I've not yet contacted insurance to broach this. Dr. B would not write the orders for the out of town infusion, and it is my understanding that the insurance approval is physician-specific, though I am not completely certain. I would love to hear if others have experience with this. #3 - That is my understanding.

Did you have an endoscopy and/or colonopscy done? GI doc has just requested it be done on my daughter to check for Chrohn's and other things. Is there a blood test for Crohn's?