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Posts (8)

Tue, Feb 4 10:01am · Gastroparesis in Digestive Health

I've had gastroparesis since 2005 and I was able to deal with it until 2 years ago. I don't eat very much to begin with but I kept getting very sick, pneumonia/bronchitis/dehyration etc. My electrolytes kept dropping down so fast causing confusion and making me so sick. Between 2016 & 2017 I was in ER 17 times, with 7 admissions. Gastroparesis reconfirmed again early 2017. I kept telling 2 gastros, my internist, a "specialist" that I paid out of pocket seeking a diagnosis; telling all of them the same thing, I couldn't hold my food down, not even the gastro diet, my stomach hurt all of the time, I was vomiting 4-6X week. That I was trying different foods in small amounts but It didn't matter. I told them I was belching so badly that I couldn't sleep, that I was hiccuping constantly that hurt. The hospital, along with these doctors all ran labs, labs all positive for dehydration and electrolytes. Stopped going to doctors & ER. Sick & tired, literally. Have been bedridden over 2 years. Finally, after 4 months, my husband insisted on taking me to a clinic outside hospital system. The clinic had access to all my records. PA diagnosed me within 15 minutes – severe malnutrition due to gastroparesis. Saw a new Gastroenterologist, tested me, gave me hope but I was unable to take Domperidone. He said I was so sick that he had to send me to Tampa. I'm seeing another Gastroenterologist on March 23 & a surgeon on March 27. I am scared. I am so sick, I have no energy. The pain is unbearable. I am being told I need surgery. Does anyone have any advice to give me? I'm on a liquid diet and drinking Pedialyte but I'm vomiting that presently also. Thank you so much. Donna

Mar 13, 2018 · Antibiotic side effects in MAC & Bronchiectasis

Have been on/off antibiotics since 2006 in large doses. When I moved to central NJ displayed every single symptom of Lyme in 1992 & again in 1994. MD said labs were negative. 2005 woke up, couldn't move, trouble swallowing. Lived near Manhattan so I went there to try to find out why all these bizarre things were happening to me: 4cm parathyroid adenoma removal, rectal blood hemmorage, requiring transfusion, bleeding very heavy during my period until I began bleeding heavily every day , finally hysterectomy, sick all the time. 2006 diagnosed Lyme + co-infections. Lyme MD went back over all my med records & found that Lyme lab was positive. Put on azthromycine/doxycycline/bactrim/ & more for 3 years straight. Immune system shut down due to malnutrition & gastroparesis; kept getting pneumomia/bronchitis;put on more antibiotics. I can no longer take any other antibiotics other than Clindomycin & Levaquin. I too have permanent loss of hearing right side, my hands don't work & weakness in arms & legs. If I take Rocephin, I break out in an unbearable pink itchy rash that keeps spreading; takes weeks to go away; doxy makes me so sick; augmentin I just vomit; can't tolerate penicillin. Please excuse my spelling as my brain isn't working right.

Mar 10, 2018 · fibromyalgia pain in Chronic Pain

I was also prescribed Cymbalta for pain and it has not helped one bit. Also my skin began breaking out all over the place – my face, my chest and my back. I'm 56 and my skin is always clear and never breaks out. I couldn't figure out what was causing it so I began eliminating new things that I had begun using but I was still breaking out more than ever. Today I looked up Cymbalta and Acne and it popped up immediately, not just patients complaining about it. Rather, it was a scientific study that showed how many people suffered what kind of side effects. Quite a lot of people experienced breaking out with Acne. I began to taper down tonight because Cymbalta is a drug that should never should be stopped cold turkey. I will call my MD tomorrow to confirm with him that I'm tapering correcting,

Mar 8, 2018 · Visual Snow: Anyone experience this? in Eye Conditions

I have experienced constant auras of white light accompanied with extreme dizziness and confusion. It has left me incapacitated because to be able to cope with it, I had to lay down in bed and close my eyes and tried to fall asleep. I have always woken up to residual auras of white light but Thanks to God, they are much less now. However I'm 56 and I have Chronic Lyme Disease Complex. If you have any questions or if you want to tell me any more about your daughter (for example – age, height, weight, etc.], you may either reply back to me here or send me a private message so I can email you. I truly do hope that God answers your prayers for a diagnosis and I sincerely pray for you and your daughter and for your daughter to completely recover. God bless you always!

Feb 28, 2018 · Treatment for chronic epstein barr in Infectious Diseases

You have a really good point about not disclosing any diagnosis. Your statement really made me think about how many times I've gone into doctor's offices prepared with a long list of diagnosed diseases (that I have proof of). Now since you brought it up, I believe I have been wrong to have gone armed with so many things wrong with me because I think that it's just so overwhelming for most doctors to handle and you made a great point about that perhaps if you hadn't disclosed your EBV to the Mayo Clinic, you may have had a better chance of being admitted. I truly hope that you receive some help because I know how awful it feels. Also, just a suggestion, if you can find a doctor (maybe an integrative doctor) to run some different tests on you such as M. Pneumonia, Chlyamdia Pneumonia, Babesia, Bartonella, Q-fever, Parvovirus B19, CD57, etc. just to make sure that you didn't pick up the EBV from a tick bite, it may be worth your effort, however like I said this is only a suggestion. I received Chronic EBV due to a Lyme tick bite. In any regard, I wish you the very best and hope that you find an excellent doctor and also feel well again!

Nov 24, 2017 · Treatment for chronic epstein barr in Infectious Diseases

Please bear with me as I have extreme cognitive difficulty. I’m not sure whose son is sick but I want to tell you how sorry I am for your pain as parents and that I really to understand. My daughter (now 32) became very ill at 15. I won’t go into everything because it’s not related to EBV but some of the health issues she had were devastating. She is still sick but is in denial. There is nothing I can do, she is a married mother now. I do understand how alone you feel. I just wanted to reach out and let you know that someone cared. At least my daughter’s health related issues were found within 2 years and dealt with. It is a suffering when you keep searching for an answer. I understand that from experience. I do hope that your son or sons get well soon and that you find a really good doctor to help you. I know an infectious disease doctor in Staten Island NY who I haven’t seen since 2009. His name is Dr. Ernest Visconti and he is elderly. He’s listed as a pediatric infectious disease MD but he treats adults as well and refers out. Dr. Visconti was very kind, patient and thorough with me. He’s a very intelligent man and he takes most insurance. If anyone wants his number, I’d be happy to provide it. The wait in his office is usually quite long and if you were to travel to see him, you would need to make it very clear to his staff that you need a long appointment. His daughter works for him. I don’t remember her name but I could easily find out. She would be the best person to speak with. I wish you all the best.

Nov 24, 2017 · Treatment for chronic epstein barr in Infectious Diseases

Thank you so much for replying to me. I will definitely seriously consider your advice and talk it over with my husband. It was very kind of you to care enough to share your story and I appreciate that so very much. My biggest issue is lack of funds but I have a strong faith in God and I know He will always provide. I hope you enjoyed your Thanksgiving. Warm Regards

Nov 22, 2017 · Treatment for chronic epstein barr in Infectious Diseases

Hello to all. I’m 56 years old. i’ve had Lyme disease 23 years -not diagnosed until 12 years later. Infectious disease specialist iNY diagnosed me with Chronic Epstein barr. Moved from MY to SW FL 8 years ago. Always positive for Epstein barr and mononucleosis. Have seen a DO/Naturopath 3 hours away since June 2016. I can’t find an MD where I live for help. I’ve been to at least 15-20, including infectious disease. I have been treated as if I’m looking for attention, a s if I’m deceitful, a hypochondriac, that I’m mentally ill and there have been comments and questions about my marriage with my husband sitting right next to me, holding my hand, obviously upset and scared for me. Please don’t think that I’m arrogant but I’ve had to become my own advocate due to all of the above and this is with files of documented evidence of how very sick I am and I know something is very wrong with me.DO doesn’t accept insurance, has pushed all of his own products and in house servicest, hasn’t helped me, has helped himself to housands of dollars that I can’t spare, not going back. I have so many ongoing infectious bacterial and viral, mold toxicity etc but just sticking with Epstein barr. I’m so scared, I need excellent medical care by a kind and patient MD but I don’t know where to I turn. I so much want to be the energetic, vivacious woman that I used to be. I don’t understand why MDs, family and friends etc would ever think that those of us in this condition are really not sick. And nobody has to tell me or test me to confirm how ill I am, I can feel it inside the body that I have had for my entire life. If anyone can please give me direction I would be so grateful. 2013 memory testing showed decline in cognitive function. Beginning in early 2014 began having black out episodes while driving. December 2014 had to stop working and apply for disability, grateful to God I received it in 6 months. Stopped driving. June 2015 began forgetting episodes in my life, my husband had to stop working because I was falling, losing conciousness, much more. December 2015 became totally exhausted. January 2016 rapid decline, always sick (pneumonia June, July, August and bronchitis 4X). January 2017 stopped being able to take care of my home, can’t even walk one block, so tired, so desolate, spend most of my time on the couch or in bed. 2 weeks ago, unable I can’t eat anymore, abdominal pain so bad, bloating,. CT scan normal Vomiting began a year ago. Gastro did his tests, his diagnosis I’m nuts. And he knows that I have severe gastroparesis and a serious small bowel to large bowel motility issue.I began entire body shaking about 3 weeks ago, no changes in meds. Also I feel really strange as if something is frightening is happening in my brain. Its hard to explain. My entire body is in pain. I’ve no stranger to pain but this is different. All my lymph nodes are swollen and I keep testing + for dehydration, among so much more. Difficulty using my hands. EMG testing i2006 abnormal, automatic system testing abnormal 2009. Can anyone please help me? I feel alone and confused. I am seeing my Neurologist next week. He is an excellent M.D. Thank you all for your time & patience.