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  1. Thank you both so much for your suggestions and encouragement. MomWithOCDSon: Thank you for the suggestions regarding methylation and genetic markers. I will look into these things. I’ve been working with a doctor that I think would be considered a functional medicine doctor. I’ve been thinking about possibly considering working with a naturopath as well. I have had different tests done for porphyria, although I’m not sure if the tests were performed at the appropriate times according to my symptoms. My urinary porphyrin levels have been normal. I’m not sure, but for the acute porphyrias, I think it is recommended that urine tests be performed when the patient is having an acute attack for the most accurate results. In my case, I’m not sure I’ve ever experienced anything that would resemble an acute attack of porphyria. I do have certain periods where my symptoms temporarily get worse for several days such as constipation, nausea, headaches, random pains in my back, arms, legs, and increased rage. I’m so glad your son is doing better. bobh: Thank you for your suggestions. I did try moving from the place that had mold to another location, and I’ve been living in the new location for about a year. I haven’t noticed any visible mold at this new location, but it’s possible there could be some mold where I can’t see it. I haven’t noticed any improvements in my symptoms since moving. It almost seems like my physical symptoms have been getting worse over time. I’ve been thinking about doing the ERMI (environmental relative moldiness index) test where I’m living, but I’m not sure if the test is reliable.
  2. Hi, I am new to this forum. I thought I would introduce myself, and also wondered if anyone might have suggestions about some unexplained symptoms that I experience. I am 23 years old. I was diagnosed with PANS a year ago by a neurologist who diagnosed me based on my symptoms, and also through my Cunningham Panel results. I was treated with one course of IVIG over a 3-month period, which didn’t have any effect on my symptoms. I’ve had many tests done to evaluate for infections and other conditions, including brain MRIs, lumbar puncture, many blood and urine tests, etc. I have a positive Igenex Babesia FISH test. I also have a positive Bartonella serology through Galaxy Diagnostics. I have 4 bands on my Lyme Western Blot. I’ve taken several courses of antibiotics for Mycoplasma (which I now test negative for), and the possible Babesia infection. I may have first developed PANS when I was 7, with sudden onset OCD, separation anxiety, etc. after some type of illness w/ vomiting and high fevers. The symptoms I developed after this illness lasted for several years, but the severity seemed to subside with time. I didn’t know about PANDAS/PANS at that time. Years later, I became sick with various symptoms right before high school, and was diagnosed with postural orthostatic tachycardia syndrome (POTS). I also developed symptoms that resembled OCD, anxiety, and depression, and also had trouble concentrating, around the time of the POTS dx. Neuropsych testing showed some trouble with executive functioning. I’ve tried several SSRIs and stimulants over the years, which helped somewhat at first, but have become less effective as my mental symptoms have worsened. My mental and physical condition has progressively worsened. Also, since I was young I’ve always felt different from other people, even around those who have struggles similar to mine, such as OCD. For example, I have trouble interacting with people. I have many mental and physical symptoms. My mental symptoms include: severe anxiety, extreme fear of vomiting, OCD, tics, irritability, rage, angry outbursts (this involves episodes in which I cry, scream at, and blame my parents for making mistakes); mental fatigue, apparent loss of previous cognitive skills, inability to engage intellectually in most activities, difficulty concentrating and processing information (not able to absorb most content on TV, when reading), lack of comprehension in certain areas; trouble maintaining interest in more than a few topics at one time; trouble finding my way around places, and mental exhaustion in communicating and with simple tasks. Also, I’ve had the fear of vomiting for years, but until recently I didn’t fully recognize that what I was feeling was actually fear and anxiety. There’s also an aspect to what I experience, which is hard to describe, but I feel that it is mentally painful to be conscious all the time, even while I’m at rest. When it is at its worst, it feels that my mind is on fire and it feels absolutely unbearable to be conscious. When this happens, I will scream and cry uncontrollably, and Ativan is the only thing that helps blunt the pain somewhat. These episodes often result in me running around, crying, and screaming at the top of my lungs. When this “mental” pain is at its worst, I often will also feel pressure in my head, tension/stiffness in my neck, and a feeling like my mind is being squeezed. In general, I have a constant sensation of something blocking the flow of my thoughts, and a resistance when I attempt to think. I feel that my mind is stuck in a pattern of repeating thoughts/ideas. My parents assist me with most daily activities. I noticed an improvement in my ability to process information when I took Xifaxan for 7 days (for possible SIBO). My physical symptoms include: Feeling full quickly when I eat, which has resulted in dramatic weight loss; chronic constipation, autonomic dysfunction symptoms, generally feeling very unwell, chills, severe fatigue and weakness; body aches, both aching and shock-like pains in back, legs, arms; abdominal pain, burning and gnawing sensations in stomach, abdominal discomfort and inflated feeling in abdomen, constant feeling of pressure behind eyes, intermittent involuntary eye movements, eyes are sensitive to light; ear pain, shortness of breath, mucus in throat, headaches, itching and burning skin sensations (face, around mouth, legs, upper back). My neurologist thought I might have porphyria, but my tests have been normal. My urine sometimes changes from straw color to reddish brown when exposed to sunlight. I had a genetic blood test done for the acute porphyrias through Mayo Clinic. The test identified two heterozygous mutations, one on the HMBS gene, and another on the CPOX gene. The interpretation of results: One alteration is a polymorphism of the coproporphyrinogen oxidase gene that modifies the effect of mercury on porphyrin metabolism in humans, resulting in the excretion of high levels of atypical porphyrin upon mercury exposure. The other alteration, which is on the HMBS gene, is described as a variant of uncertain significance. The interpretation states that the results are not enough to establish a diagnosis of acute porphyria. I also had been living in a moldy environment for a number of years. I apologize for writing such a long post. I just feel so lost and helpless. I’m not sure how much PANS could account for my problems. Thank you for taking the time to read my story.
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