Michel12

Could someone please tell me the best way to verify Lyme or Pandas? I match with the symptoms but have had at least 3 lyme tests including the western blot that came back negative. My doctor cant do Igenex in his clinic. Any more elaborate tests with high accuracy? I have been a mystery diagnosis for 8 years and want answers. I have been on minocycline 100 mg for 3 months and am feeling so much better but have been misdiagnosed so many times I want firm diagnosis to rest my spirit. I need verification of Pandas or Lyme. My doctor who is treating me says it doesnt matter but IT DOES! After lurking I still dont have all the answers or available resources. I would just like to talk ot an expert for a long time to ask my questions.

Hi I know 23andme doesnt ship to Maryland. Are there any alternatives to this?

i had the same problem with medication. none were helping me after trying so many. Unfortunatley this led to them doing ECT which made me even more worse and was one of the worst turning points in my life. I will look into neuroadrenals. Any PAndas tests I should get done? My strep came back negative of course.

Hi i'm wondering what are some out of the box things or "advanced" things you did to get a diagnosis? I've heard of people talking about 23andme and was wondering if its informative to a doctor and not a scam. I had once gotten a spect scan form the amen clinics and no doctor will even consider it. Any other things I should look into for PANDAs or lyme?

This is very interesting to me! As far as i know my Ana was negative. Although my anti-phospholipid antibodies were high. My doctor put me on daily aspirin and was concerened of clotting so did an MRa/MRV of my brain which came back good. I am getting a ct angiogram of my neck. I'm not sure if I was diagnosed with anti-phospholipid antibody syndrome though. I will talk to him this coming week about this.

Well I was looked at by a geneticist and she couldn't confirm ehlors danlos and diagnosed me with connective tissue NOS. My doctor origionally thought I had ehlors danlos becuase I had cranio-cervical instability, stretch marks all over my body. I however do no have hypermobility. I have not taken steriods but was just started on an antibiotic called minocycline at a low dose. It seems to have improved my energy. I'm going to tlak to my docotr about it Wednesday becuase I have been on it for at least 2 weeks. I think i'm going to schedule an appointment with a lyme docotr soon. I just need my docotr to go over the reccomendations he made. I've started on an antibiotic called minocycline for about 3 weeks at 100 mg a day. It seems to be helping with my energy. He usually gives it to his POTS patients for anti-inflammatory effect.

Hi I have been suffering since I was 12 and would like some input on you guys because my doctor just brought up Pandas. Well when I was 12 something weird happened. I don't know if it happened overnight or not but I started feeling poorly. I lost the ability it felt like to experiance pleasure or the energy or excitement I used to have (ecspecially when playing sports). I started to get really bad headaches ecspecially when I exercised or exerted myself. I did not want to exercise anymore as "it hurt my head" when I ran and I kept saying I felt lightheaded or "I wasn't getting enough blood flow to my head." when i came back to school for my 8th grade year after withdrawing all summer from my friends. I realized i couldnt talk to my friends anymore on my first day. I forgot how to socialize, what i used to say to them or how to please them or make them laugh like i used to. I basically forgot that i was friends with them. My mind felt slow and blank. I would complain to my parents "mom I can't think" my mind feels dead I cant know what to say. I cant visualize anything. I cant remember anything. I dont daydream anymore. I felt really weak and tired throughout the whole year. My head felt tender and hurt all the time. My eyes were very droopy. I didnt enjoy anything and do anything but stay in my bed and sleep. Then the OCD came out. It happend over night. I could no longer be around my sister anymore. I couldnt touch anything she touched couldnt breath her air. I would put towels under my door. I couldnt drive in the same car as her. Every time i touched something she touched I would get much anxiety and wash my hands and do a ritual. She was 'killing my brain cells" She was making me not be able to think and causing my problems. Anyway eventually I had to leave school freshman year saw a myriad of pychiatrists. Was hospitalized etc. to no benefit. They did tests in the hospital like lyme blood test MRI, eeg, look for diabetes, and labelled me with "treatment resistant" deppresion. They eventually did ECT therapy at 15 to absolutely no benefit which made me worse! I stopped doing my sister obsessions though (at a cost). I always thought it was a pysical problem and kept telling them! But they c\kept saying oh no deppresion has psychcal compalints. I was diagnosed with POTS in the hospital becuase my blood pressure kept dropping and heaert rate accelerating and have been seeing a doctor for that. My neurologist now is suggesting that I could have had Pandas. I had tics when i was a kid and of course strep throat. I also had mono for 4 months too. I do not feel better after taking SO many antideppresents and antipychotics. I even went the holistic route and was taking 40 vitamins a day at one point! I'm looking into autoimmune and lyme. I live in Maryland and my beach house is a heavily infested tick area. My next door neighbor there was just diagnosed with lyme after having 9 ticks in her! Also Of note I was diagnosed with A connective tissue disorder which my doctor suspects is Ehlors Danlos syndrome. And I had increased intracranial hyperetension which was diagnosed with Pseuodotumor cerebri. I had a vp shunt put in to no relief really. Any ideas any tests any feedback! I'd love to here it! I'm 21 now!