Posted by lizhill on August 7, 2011, at 18:54:00
Well I am new to the board. I've got lots to say and lots to share. I've suffered severe panic disorder, anxiety, multiple pulmonary embolisms, multiple sclerosis, 2 Factor clotting disorders, fybromyalgia,uncontrollable shakes, thyroid disease and probably a few more things. I've been on podcast interviews. I have a huge following on certain places on the web. I am writing a book. I have much support and much more to learn. I was quite ill for most of my life. As a child I hardly said a word until I was about ten. Then one day I just started talking and never shut up. I was always very sickly. I watched most of my family dying early on both sides. My Father of an MI at 45 and my Mother who is severely brain damaged from multiple anuerysms, has MS, and severe acoholism. As time went by, I noticed by the age of 25, I went from calm to severe full blown panic disorder in one day. Then a year later, I started going blind in my left eye and seeing geometrical shapes out of my right eye. Then I would have chronic chest pain, shortness of breath and sometimes even cough up blood. I was always told nothing was wrong with me when I ran to the ER. A few years later, I felt a lump in my neck and touched it and felt a warm gush. The next day I had the worst headache of my life and severe stomache pains and extremely rapid heartbeat. I lost 60 pounds in less than 2 months. I would go to the ER for help b/c I did not have insurance and was told that I had mental issues and would be locked up the next time I was to walk into this particular public hospital. A few years later I started going numb in parts of my body. I would walk out of bed and collapse b/c I would not have use of my leg. The medical community kept on telling my family that nothing was wrong and it was all mental. I then lost custody of my children b/c of this. I was suicidal when I lost my children. I went into a great depression. A few years later, I was dating a surgeon. Because of a natural disaster and my relocation, I moved in with him. I was walking in our home one day and collapsed. He checked me out and told me I had a bruit. A week later, we moved to my hometown where I imediately went to see a cardiovascular surgeon. I had a blocked disected left carotid at the age of 36. A few months later, I ended up in a wheelchair and was told I had MS. I got out of that wheel chair within 3 months, went to a walker for a few months and I was fine as long as I was on heavy narcotics. The panic disorder hit again and was full blown until a few months ago. At the age of 38, I told my now ex the surgeon that I didn't feel good to drive me to the hospital. He called me a facticious disorder, Munchausen Syndrome, attention seeking **** and to drive myself. I went in the hospital, had to have my gallbladder removed. 2 days later, I was told by a nurse to get up and walk. I coughed and told her look at the blood I coughed up. She told me it was irritation. A doctor walked in and rolled his eyes at me and told me to get up and walk. I did. Within 5 steps, I collapsed. While I was in the CT room a psychiatrist came in and tried to write me up 5 prescriptions for psychiatric medications. I told him if he thought I was making this up, he needed to be on this medication. I came out of the CT room and was sent to my room. A hematologist/oncologist walked in and told me I was not making up years of illness and I had a bilateral pulmonary embolism. I fought for my life for nearly 2 1/2 months. I got better before all of my genetic testing came back. But I still had MS symptoms, fibromyalgia, chronic fatigue, unexplained weight gain, panic disorder. I walked into the hemo onco's office to be told you have MTHFR and Factor XII hyperplatelet. That was all I was told besides the fact that I would be on coumadin, lovenox and folgard for the rest of my life. So I believed that I would start getting better. I didn't My ex the surgeon left me for a 23 y/o while I was in the hospital. Took my car and most of my possesions. I was homeless. Friends took me in and I got back on my feet on a disability check. Well about a 18 months ago, I had my last pulmonary embolism. I questioned the doctors at this well known hospital why did I have a PE (pulmonary embolism) with an INR of a 2.8? I remember reading about homocysteine and MTHFR and the red blood cells being oddly misshapen with hooks on them. So then I knew my platelets were not the reason. Even one of the top hemo/onco's in the country couldn't even give me an answer. I started questioning the MTHFR and googling everything I had and coming back with knowing I was the wrong form of b's. I needed the methyl forms and not the cyano forms. I was researching heavy metal poisoning that fell into this catagory. I confronted my hemo onco and told her that I wanted to be put on the methyl forms of b's. Her answer was that so many people have MTHFR and I didn't need to worry about it. This enraged me. So then I started posting on boards about MTHFR and making youtube videos pleading for my life. A wonderful woman contacted me and told me to contact a doctor in Richland, WA. I did. He gave me a protocol and told me I was very very sick and needed imediate help. I brought it to my hemo/onco and she just blew me off. I went through many doctors. I even called Pamlabs and spoke with the manufacturers of Neevo, Deplin, Metanx and Cerafolin NAC. They gave me a list of doctors but none of them took medicare and said they could not even see me if I paid cash just b/c of being on medicare. I probably went to about 20 doctors that had told me they wouldn't treat me. Finally I found a hematologist that I finagled some metanx out of. I was already following the protocal with epsom salt baths, all the vitamins and supplements, eating all organic a gluten free. I pulled my medical records from the hospital that wouldn't help me and I saw I had a tumor on my right thyroid, a hamartoma in my liver and poor absorption possibly celiacs or IBD. I also saw that I had another clotting disorder called Factor VIII they failed to tell me about. I want to tell you all within 48 hours of being on metanx and getting all heavy metals and being on an organic diet and eating gluten free, I trashed my Paxil, Valium, Fiorocet and neurontin. I'm still on the coumadin and lovenox to cover but now a geneticist has redone my bloodwork. He thinks my Factors VIII and XII may be coming into normal range. I now have 20/20 vision. No medication and no exhasberations of MS. Fibromyalgia is gone, no panic disorder, I have energy through the roof. I have found a holistic doctor that is going to slowly incorporate other things in my new found lifestyle to get me even better. He will also be working with a doctor that I told my story to out of Seattle, WA area. Long story short all. I found out what caused everything. MTHFR and heavy metal poisoning particularly extremely high levels of mercury and lead. They say I have a few years to go. I am now interviewed on podcasts by doctors and have many many followers. I want to tell my story to all and still have lots to learn. I was sick my entire life and am now healing. There is hope. Never give up. And I don't know if I am allowed to give you all some podcasts that I have or not but am not afraid to tell any of you who I am and what I am doing to make more doctors aware of MTHFR. I am very informative and know much about the mutations but am still learning much more. I am trying to keep it simple. One thing that I have learned though, is that you just can't go on a mehtylfolate and expect to get better. With MTHFR we cannot metabolize toxins and heavy metals easily so it is an entire lifestyle change. I'm glad I did it and hope I can learn more from you all. It feels great not to be nervous 24/7, spontanously crying and always feeling doom. I never gave up and never will give up.
poster:lizhill
thread:993108
URL: http://www.dr-bob.org/babble/newbs/20110115/msgs/993108.html