The formation of CVO goes back to Diane Dike, Ph.D. Diane has cryoglobulinemia and was diagnosed at an early age. She has overcome much in her life. You can visit www.DianeDike.org to learn more and watch her cryoglobulinemia story on "Mystery Diagnosis". Due to her health issues and all she has overcome, in 2007 Diane founded the CVO's parent organization, Second Chance with Saving Grace. She has spoken at many conferences, events and hospitals, authored books, has been on radio and television, and has been educating and raising awareness about cryoglobulinemia, disability and her faith for over 23 years.
After being diagnosed with cryoglobulinemia in the spring of 2006, I wanted to learn all I could about this frightening disease. Through Internet research, I found Diane. We connected via a phone call in 2007 and finally met four years later in her home in Colorado. Diane asked if I'd join her organization to help her educate people about cryoglobulinemia. Not long after we began the formation of CVO. We had similar visions and Diane gave me the reigns as director to help bring awareness and support to all those suffering in silence and fear.
After contacting people that Diane knew had cryoglobulinemia, we began meetings on Skype, newsletters and co-moderated with Healthshare and Yahoo HealthGroups and a Facebook support site. During this growth, Marianne Vennitti contacted Diane. She was diagnosed with cryoglobulinemia in 2009 and was seeking answers. She joined the grass root CVO team.
We continue to grow, I feel blessed to be a part of such an amazing group and the incredible accomplishments and projects that have occurred thanks to team work. People ask me how someone with as many diseases as I have (15 to date - five that are rare) could possibly look normal and direct CVO. My answer is easy. They haven't met all of you. I'm just a homeschool mom and housewife with a heart and willingness to help others. The future chapters of CVO will depend on each of us.
(After several moves and her boys difficult homeschooling schedule Rochelle made the sad decision to step down as CVO director. She is still a vital member of our team and her dedication to the cause will impact CVO forever and will never be forgotten) -Diane.
Rochelle Ray, Co-Founder of CVO Original CVO Director, TX
My husband James Nettles was always a healthy, hardworking person, but in November of 2008, when the weather in Virginia became cold, he began experiencing pain in his hands and feet. His fingers and toes had begun to turn a dark color. His hands and feet swelled to unimaginable proportions. The pain was excruciating. Thinking he had severe rheumatoid arthritis, the doctors' gave him prednisone. He was taking 60 mg a day. His swelling did diminish somewhat, but the ever-darkening coloring in his toes and fingertips worsened.
Frustrated, we tried a new rheumatologist who also sent us to a hematologist. They both agreed that he should start Cytoxin a chemotherapy drug given by IV. They hoped the immune system would stop attacking itself.
Over the next couple of months, his toes and fingertips became necrotic (dead cell tissue), and the pain was almost more than he could bear even with the strong narcotics. Now, July 2009, the vascular surgeon said the toes would have to be amputated as he was in great risk of infection.
After the amputation things started to improve, and James began taking a new drug for the arthritis. In November of 2009, he again started experiencing the same symptoms. This time however, his toes went necrotic much faster than the previous year. Shocked, we tried a new vascular surgeon. Again James went back in the hospital for a second amputation. The surgeon removed his remaining three toes on his left foot. We left the hospital in mid January of 2010, thinking perhaps this time things would work out better.
A few weeks went by, the wound did not heal and we were desperate for answers. The stress of not being able to keep his heating and air conditioning business going took it's toll on us even while we were afraid he would lose more of his extremities. I decided to e-mail the world famous Mayo Clinic in Rochester, MN. The surgeon agreed that they may have seen this condition, and, if we could manage, we should go there.
In early February of 2010, we boarded a flight to Minnesota. James could barely stand and was in unbearable pain even with the narcotics. Much of this he doesn’t remember.
We had an appointment with vascular surgeon and the vascular “wound” clinic. One look at his “black” toeless foot and they told us he needed to be admitted as he was in risk of going septic and possibly even dying. After 10 days and endless tests, including a angiogram and a bone marrow biopsy, we returned home. Finally we had a diagnosis: Cryoglobulinemia type 1 and Multiple Myeloma, neither of which we had ever heard of.
A week later, we returned to our local vascular surgeon. Clearly, the wound had not healed from the first two amputations. They admitted him that afternoon. The surgeon again tried to take off the necrotic skin, which was the remaining top part of his left foot. Two weeks passed and still no healing. It was now early March. The determination was made to go higher up the leg in hopes that the larger blood vessels would have better circulation and the wound would heal. Now his fourth amputation, the surgeon took off his left leg below the knee.
Having read information on cryoglublinemia, I requested that the surgeon warm up the operating room and the tools he would use. We are not sure if that was a key factor, but this amputation finally healed.
In all we spent 14 months searching for answers and visited numerous doctors. In September of 2010, James underwent a stem cell transplant and high-dose chemotherapy. The team of doctors at the Medical College of Virginia thought that this procedure would also put the cryoglublinemia in remission. We are happy to report the stem cell was a success and the cancer is now in remission. As for the cryoglublinemia, we are cautiously optimistic with our high-school-age son, Derrick, and three dogs. - Anne Perry Nettles
James Nettles, Jr., GA
We've connected with over 100 patients impacted by cryoglobulinemia.
We are better together!
More to come. Stay Strong and Courageous in our CVO family.
"This site is fantastic and very well prepared. It is the world's first CVO comprehensive cryo site. It's an honor to be a part of it. I'm ready to help Diane and her team anytime." - Dr. Vick
Trish Donahue, CA
I have been doing tons of research and all of it sounds awful, until I googled "living with cryoblobulemia" and found Diane Dike, Ph.D. I reached out to her and she reached back. She took time to visit with me on the phone. Hope is restored.
Will find out my bone marrow tests soon they are looking for multiple myeloma, lymphoma and NHL. Have had Monoclonal gammopathy of undetermined significance (MGUS) a year, breast cancer with radiation 6 years ago. I think radiation is a culprit! The doc that gave me 2 rituxamub treatments thinks 40 mg pred. a day is too high and I should be on 20 so I'm working on lowering that. I feel like one of my pugs on this stuff.
For the past 10 years, I felt something else was wrong, but doctors couldn't find anything. I am a fighter and now that I know what I have and after talking to Diane I know better how to manage it and try to prevent episodes. I was so glad to find out Diane's created this safe place to find information and connect with people who have cryo. I can communicate with them about treatments, meds and conditions. It is so scary. We need this website. Thanks to Diane the warm socks and UGG boots my feet feel better!! I should add no hep B or C, and my diagnosis is mixed cryo type 2.
I found that Diane and I have so much in common. My pug Pudge has cancer (3 mast cell tumors removed and now my vet freezes them off) which is less invasive and she has not had any more. I give her benadryl 2 x day, and lowering her pred to 2mg as of this week, 1mg next week. Pudge has inflammatory bowel disease and is on special venison diet and doing great, my little angel. They are wonderful and so is Diane. Thank you for visiting with me it helped so much.
I am putting myself in GOD'S hands and the plans he has for me but I must say Cryoglobulinemia alone is very painful and exhausting. Now with Multiple Myeloma I can get totally overwhelmed. Every 4 days I go for Velcade shots. I do get very tired, but am moving along. My biggest wish is for the rest of the cryo places to heal so I can get around better. Then I pray the shots work a miracle putting the Myeloma in remission. I’m wearing a ski suit and there is definitely a difference in how warm it keeps me with my coat! I have a bed in my living room so I can get to the kitchen an bathroom easier with my walker an that works great plus I got legs for my wheelchair to keep them elevated. GOD has been watching out for me. Family found hospital sheets, blankets, and mats for me. He is holding me tight and making sure I am taken care of! I wish everyone else the same blessings.
I've had 3 bone marrow tests. They were very painful. The tool got stuck every time they tried to get it back out. The second Dr. had to actually get the third one to pull hers out then she did another one on the other side and it got stuck too! It was so painful, but God got me through it. First one came out MGUS, but by the second one it was MM. Dr. said he had never in any of his career seen it change like that since it normally has a 1% a year growth rate. Another Dr. said she thinks the trial drug made it do that, but I can't believe that since I had been in the ER three times before I ever received my trial drug. Hopefully in time we can get more answers or we can discover something new. I have turned myself to God and whatever help I can give for others who are living similar lives to this. Basically I would be a guinea pig or example, test person to help others. My damage is permanent. I will always have to have a walker for home and small places and a wheel chair for big places, but this is my life now and I will learn to live with it as I learned to talk, walk and grow as a child. Today in little old Beaver, Ohio though it has been very warm and my day was beautiful. Not many of these so I am living it up.
I had been injected with steroids. I'm so sick I just smile and head home where I get sicker and can't even get out of bed. My mother finds me this way: very upset and infection setting in the places already on my legs. We get to my family physician who is also upset and prescribes me two antibiotics telling me no steroids or shots. I am not allowed out at all in cold from leg damage. My walking is getting a little better from cryo damage. A few days have gone by and with the antibiotics I am starting to actually eat something and feel better. I have to go though physical therapy and occupational, five shots every four days for myeloma then one week blood tests with results and five days again of a shot every four until who knows when! I’m thankful to be included in this website project. It is important to share this information and I’m willing to do whatever I can to help others by sharing my story and pictures. Thank you Diane for all you do to keep our community together.
Kathy Strong, OH
All pictures and stories used with permission.
I first heard about Diane Dike, Ph.D. and her story from the show "Mystery Diagnosis". As my late husband and I sat there watching we were stunned to know that she had the same rare disease, Cryoglobulinemia, that my husband had. Her story was heartbreaking and I immediately felt a kinship with her. I knew then and there that I had to get in touch with her. It was like a door had opened for us and I thought that maybe if I could talk to her she could shed some light on this for us as to what we were facing and what our options were. We had been to numerous doctors and they didn't have any answers. I had done some research via the internet in hopes of finding some answers but was discouraged when I didn't learn anything new. I was on a mission. I had to know more about this disease and so I searched on the internet for Diane and found her story and a site that I could visit to learn about this.
I joined the CVO support group. Visiting this site, I saw a few people that were members and read their comments and some shared their stories. What a blessing! What a relief to know that I was not alone. Yet alone was what I felt like most days. Now, here was a place that I could go to to find friendship and comfort. The people welcomed me with open arms and I accepted their love and kindness and much needed support. Loosing my husband was devastating and they encouraged me and helped me by letting me share my story.
I didn't share at first that I had lost my husband Jack because I felt that this might discourage them. Jack suffered for 14 years with cryo along with Hep C, Raynauds syndrome, Renal failure, an Aneurysm in his brain and Non-Hodgkin Lymphoma and Hypertension. Along with all of this he suffered a stroke and began to have seizures. At one time he was taking over 250 pills a week. I could not possibly tell you the feeling that I had watching him suffer through all of this and knowing that there was nothing I could do to make him better. I always thought that I could control everything or at least prevent bad things or unforeseen things from happening and when he became sick I quickly learned that I had no control over any of this. I was scared and afraid of the unknown.
I thought my life was planned out, or at least I had it planned it for us as he did. We would raise our children, play with our grandchildren, maybe do a little traveling and spend our golden years rocking in our chairs on the front porch. Life has a way of turning around and suddenly your world that you had dreamed of had other plans for you. You don't understand it and you can't comprehend it and you can't find a peace within yourself to know that somehow any good is going to come from it. When you see so much suffering of the one you love.
He was a strong man, a superintendent for a construction company. He would tell you in his own words "I was finally at the top of my game and look at me now". A father of 4 children, 3 girls, a son, and 2 grandsons. We were married for 31 years. As my daughters would tell you, their dad knew everything or at least they thought he did. He was firm as a father and he was a great story teller and could always tell a good joke... you could always count on him when needed.
We loved to hear him laugh and that made us laugh. He was 53 when he passed. I remember that the last words he said to me before he went into surgery. I will never forget them, he said "Debbie you know why I do all this? I do it all for you and my children." Many times he cried and wanted to leave this world because of his pain and he thought he was a burden to me. I prayed to God above to let me keep him forever. I would tell God "you don't need him as much as I do". He fought until the very end. God knew that Jack was tired and he needed to rest. I try to somehow find some comfort in this knowing that he is finally at peace and resting after so many years of being in pain. It is hard to let go because I see him everywhere, I hear him in every song and every night I still want to reach over and touch his hand and hold it until I fall asleep.
Through all my sadness and pain I found new friends with the CVO group and they have been my fortress. I have never met any of them but I have talked with a few by phone and some through the internet. I hope that I can somehow lift their spirits and encourage them to continue to fight on. My hope is that we will give this disease and many other rare diseases a voice and be heard so a cure may be found.
Debbie Patrick Kellum, GA
In Memory of Jack Kellum
RIP January 2011
My daughter Lisa helped me find CVO. Cryo started off with itchy arm bumps which the Doctor said was an allergy to something and to work it out myself. Then got small red dots up my legs that increased in size. First three doctors dismissed me and my symptoms. One actually saying "I don't know what it is, but nothing to worry about!" Fourth doctor sent me to a dermatologist who took one look at my legs and diagnosed vasculitis. Some months later, tests he kept taking showed kidney damage so he referred me to the hospital and vasculitis clinic. After a few months they diagnosed cryo type 1, non cancerous, of unknown origin. I have so far had three sets of plasmapherisis, each time going dizzy.
Unfortunately, the cryo levels never go down as far as they expect. I had 10 days feeling good, not tired, no pain in legs, then wham back it came with a vengeance. Walking is a challenge and as I live alone shopping is difficult Pain killers help. Bit expensive, as I'm not entitled to any benefits and have had to increase heating to keep warm. I am due to have rutaximab in 2 weeks time, 2 doses 2 weeks apart, but consultant thinks I will need another set of plasmapherisis to have cryos low enough, the last one on same day as the rutaximab - long day.
Main things affected: legs and feet. Hurting and swelling, some ulcers in mouth with kidney damage, but still working okay, slight damage to liver and possibly brain. Usually use a walking stick, occasionally not needed, few times in wheelchair.
Often get upstairs early as not sure I will be able to get up if I leave it till later. I have tv in bedroom, and enjoy reading. All started, I think in 2009 or 2010. I'm 70.
Very fortunate in having supportive family, but do feel somewhat of a burden, with all the appointments, and can't drive that far. One or other of my daughters insist on taking me (I think they also believe I might not tell them everything!) I'm on 10 mg of prednisone daily. Try to stay positive, but hard at times, and to seize the day when things are good. Have had scans of just about every part of my body, and biopsy of skin and bone marrow. They are talking of kidney biopsy soon as levels going up. However going on the cryo site I know many are a lot worse than me.
Suzanne Seddon, England
My husband is the Cryo patient. He developed "age spots" suddenly and everyone said it wasn't an issue. He had cataract surgery in December of 2010 and had every complication imaginable. After that calmed down, he began to complain of aching and just feeling very tired. i took him to our family physician. He reduced his statin and said he would be fine.
At the end of July 2011 his feet swelled and he had red spots on his legs. An urgent care physician diagnosed vasculitis. Long story short, 2 different Rheumatologists diagnosed him with skin vasculitis. I knew they were wrong. Due to his sinus issues he had sinus surgery in October 2011.
In late October 2011, I contacted a physician in, NC by pure luck and he agreed to see us. He diagnosed Mixed Essential Cryo (no hep b or c or HIV). They gave him 2 rounds of Rituxan in Dec of 2011. He had an allergic reaction within 36 hours of the first infusion so the second was done in the hospital. That infusion took 19 hours and within a week, he was back in the hospital with skin rash, breathing difficulty and a white count of over 26000.
He pulled him through. A reduction in his prednisone began in March of 2012 and he started on Cellcept in June of 2012. He has started weaning from his cellcept and hopefully we are on our way to remission. His kidney function is stable, not improving but not getting worse.
Compared to everyone else, our road has been very short. I cannot reiterate enough you need to be your own advocate if you want proper treatment. If it wasn't for my working full-time, dealing with my husband's health and my 83 year old mother, I would love to assist CVO more. Right now, I am totally exhausted. It has been a long couple of years. The Doctors say I know as much as they do!
I first got acquainted with the cryo group through Diane Dike, Ph.D. I sent her a Facebook private message after I saw her on Mystery Diagnosis. I had been watching the show for a few years hoping that one day someone woud share a story that matches up with my symptoms. Diane got back to me, accepted me as a friend and invited me to the first ever international cryo Skype meeting. A monumental event! She welcomed me to the family and said the group was for a place for cryo patients, and those who love them, to meet and get to know each other, find encouragement and ask questions.
I have since found that I do not have Cryo. But I do have some kind of vasculitis disorder that has yet to be diagnosed for 10 years. Only one doctor (a rheumatologist) gave me a generic label of vasomotor instability. I thought that I might have some small connection to cryo because 90% of my episodes are brought on by cold, and go away when I can finally get warm.
Other episodes, ironically, are brought on by heat and sun exposure which Diane said has also happened to her. My episodes frequently cause high blood pressure spikes. While I am still pursuing answers with regular doctors, I am also getting referred to the NIH for their undiagnosed disease program to see if I may be accepted.
It has been a blessing to get to know Diane and the other cryo members. I can see how much it means to share our symptoms with each other and know the other members are experiencing the same thing. While I do not have anyone I can relate to with my exact disorder, it does help to have friends that have a rare disorder.
My episodes will often start with my hands or feet getting very cold and then my face getting very flushed and hot. Often only one foot and/or hand will get cold and the same side of my face will get flushed and hot while the other foot and hand will be normal temperature and the other cheek will be normal, too. This happens to both sides of the face and is very uncomfortable dealing with two extreme temperatures at the same time. I developed heart palpitations, difficulty breathing, excessive sweating and leg and feet swelling.
Monica Custer, PA
Cryoglobulinemia is a very RARE disease, most health care professional have never even heard of it . It is life changing. I have been a master welder for 33 years, have worked in the shipyards and boilermakers, navy shipyards and so on. It has been a hard and long journey.
My mother was hit by a car when she was three months pregnant with me. She was in the hospital for about a year. The doctors told her she should abort. Thank GOD she would have none of that. When I was 3 or 4, I pulled a pot of tea off the stove and burned most of my body.
I had all the regular childhood diseases. My mother had to keep taking me to the doctors. They told her I had heart valve disease and not let me run and play much but I did anyway and everybody forgot about it. When i was about nine, I came down with viral meningitis. I don't remember much about being sick. My mom told me, prayer saved me, the doctors couldn't.
My father pass away on my 12th birthday. During my teenage years, I played sports, ran track, had a lot of friends and a lot fun. I was looking at a healthy life ahead. At 20, I started having pain in my lift foot. The pain was moving up my leg and becoming so bad I found it hard to work. At 23, my leg and foot were swelling and becoming very painful. At 24, going to the University of Jacksonville Hospital they could not find a thing wrong with me. About six months later my left foot went from swelled up and red to swelled up and blue with no blood flow.
The doctors put me in the hospital. More test and then they rolled me into a big room and told me I had "Buerger's disease" and there was no treatment. They said by the age of 30 they would have to take off my lower legs and by 35 I would start to loose my other leg, my hands and so on. I went into a deep depression.
I was not raised to give up. Shortly after this my mother pass away. Being the the youngest of 12 kids, mom and I were very close. Losing her was hard, but it gave me a new drive to get back to work. When I was working with all of the pain, I couldn't help but remember all the times my father and mother had to keep working no matter how sick or how much pain they were in.
I went on the Internet to find out for myself about Buerger disease. The more I read the more I new I did not have Buerger disease. So I started to look for doctors that could help me find out what was really wrong. Every doctor I went to would said the same thing. By the age of 40, I had worked my way up to becoming the right hand man of the owner of the boiler repair company. Yet, I knew i had to start to looking for a easier job. At this time, my left leg and foot were blue with no blood flow and the right leg was starting to show the same signs. At 45, I was having many problems and every time I went to a doctor they didn't listen. I was feed up with wasting time and money.
When I was 46, I had to ask my wife of 30 years if she could start working so I would not have to work so much overtime because my legs and arms are so painful. I couldn't sleep. She said, "No way!" She had to take my son to school every day so what could I do but to keep working. When i went out of town for my job six months later, I came home and found she was running with a cop and I lost everything. With all of that, my oldest son was bipolar and then my baby boy killed himself.
That was hard. I went into a major depression. New symptoms and diseases started popping up. I saw new doctors hoping I could find one that could help me. I had no luck. I started having mini strokes and peripheral nerves problems. I got to see a neurosurgeon and then started to get some real answers. Then the day came when his office called me to come in.
He said, "I have some good new and bad new." I said, "Give me the good first." He said, "You don't have AIDs but you have hepatitis C 1b, cryoglobulinemia, liver disease and ..." the list just went on and on then he told me that the pointer in my blood work made it hard to know how bad off I was really was. I thought I could take it easy for a week or so and go back to work but this was not the case. Everyday I got worse.
About a year later, I finished the hepatitis C treatment so they could treat me for all the other problems. I am happy to report that I am now 100% Hep-C free. THANK GOD! Six months post Hep-C treatment, I cannot do much. I lost my insurance and my medicare did not start for some months. Some of my doctors would not return my phone calls when I told them I lost my insurance, even when they knew I could not just stop taking my medication.
That is when i realized how hard it to get real help. I am lucky I am from a large family and have a good women now that I can count on. CVO has been a great place to share news and encourage each other.
Rick Waters, FL
Water's Family Reunion
I have cryoglobulinemia. I suffered from severe Raynaud’s for 3 years with unidentified cause. Then they found essential cryoglobulinemia but I’m not a good responder to treatment. I started with diet changes and predisone for 1yr then my symptoms developed into joint pain and skin lesions. Since vasculitis is an autoimmune disease, I started immunosuppressive drugs Imuran, plaquenil, MTX, cellcept, and the last year my symptoms got worse. I get tired and blue.
After I underwent echo, I found that my pulmonary vascular changed and I have pulmonary hypertension. I still take all meds. I’m lucky to live in a warm climate. I never took pictures of my flare-ups. Right now I have a few lesions, livedo reticularis and a rash. In my work this kind of disease is not acceptable so I’m not comfortable to be open.
I live by the sea and it’s warm so I never have severe complication from cold temperatures but the air conditioners make it very difficult. Idiopathic cryo is a VERY Rare disease here.
I want to say thank to Diane Dike, Ph.D. I wanted to give up when I was first diagnosis but her story helped me to go on and continues to inspire me.
Anonymous, Bangkok, Thailand
I found Diane through her YouTube Channel and she invited me to the CVO Facebook Support Group. This is my story. I am currently 39 years old. Looking back in 1996 or 1997 I started to get incredible pain in my ears if I went for a walk to long outside. I thought I would die of a stroke. When I would warm up my ears the pain was incredibly worse. I would fall to my knees and hold my ears almost black out and feel nausea and dizziness. My head felt like it would explode and my ears felt like they had ice cubes attached to them and fire and razors slashing them. The pressure in my head was severe.
I did not know that in 2003 I tested positive for Cryoglobulins in my blood. No one told me. I only found out about 2 years ago. In 2005 I started to have a strange thing happen to me. The first time was on the way to a video store at night walking in the snow with my family. I could not keep up. I did not know why I could not move my legs while walking in the snow. It was not far to go. Only about a 4 or 5 blocks. I told my family to go on without me and that I had to go home, I was not feeling well. I turned to go back, was crossing the street and got stuck in the middle of it in a snow drift left from a plow. My legs locked and I could not move. I sat down in the snow, in the dark and cried.
This happened to me sometimes out in the woods especially when it snowed. I would get stuck and could not walk, my hips would lock up. I panicked. As time went on I did not need snow. My feet would lock and every step was very painful. Hikes with my friends were not safe. I could never tell when I would get stuck. One thing I knew, the cold made it worse. My best friend thought it was all in my head and so did my ex-husband. I kept saying something terrible is happening to me.
One time I had some sort of kidney attack. Perhaps a kidney stone? But it was severe and lasted a month. My doctor was sure it was kidney stones. I noticed if I leaned against a cold back when sittings like a leather seat in a truck, It went straight to my kidneys. If I sat on a cold hard surface the pain would travel up my spine and to my kidneys. Nerve damage started to attack my hands, feet and legs. Severe swelling of legs and joints caused me to walk with two canes. We prepared to purchase a wheel chair. The canes hurt my hands and every step hurt the nerves in my feet like walking on rocks and glass barefoot. I could not crumple a peice of paper.
I started to do research. You see I had Hepititas C and was diagnosed almost 20 years ago. I started to learn that people with that condition can get mixed cryoglobulinemia. What is really weird is I came across Dr. Diane Dike's Youtube channel years ago, it was the only thing I could find about cryoglobulinemia but I didn't really think that is what I had because my legs didn't turn black. I felt bad for her.
I went to my doctor and I told him about my ears again and he said that I have Raynaud's. I agreed. So I told him about my research and said "don't you think with me having hep C for so long that I should be tested for Cryoglobulinemia?" He said, "No". But something made him look through my huge medical file and he found that I had already tested positive for it in 2003. How could no one tell me?
But a second test showed up neagative and I knew they did not handle the test right. I watched them fumble with it not knowing what they were doing. I even called the lab up to complain. So I always had to cover my ears and be afraid of the cold. Then last summer there was a heat wave. My boyfriend likes the air conditioner on all the time especially at night. I would be freezing and in pain. He thought I was over reacting. In the mornings I would see my body covered in spots all over. I thought we had bed bugs or fleas. I made the manager spray my apartment for fleas. But it kept happening. Waking up with these spots. We also did a little bit of drinking, I had not drank alchohol in months, looking back it seemed worse when I drank. Also my boyfriend noticed my lips were very blue after swimming in the lake . I could not get warm and it occured to me, I could have drowned. My limbs could have locked in the deep water.
Sometimes get the spots when I have not drank and I realize it has to do with the cold. Raynauds has now started in my hands. I had thermal gloves yet they were bright red, white and they stung so bad while they tried to warm up. It's like having to hold your hands in fire and that was from just walking across the street.
Cryoglobulins in my blood recently where very high. They were not planning to treat me for hep C for another 2 years. But becuase of the cryo and raynauds and vasculitis, they want to rush treatment. When he saw the rash on my body he knew and was very concerned. Same with my family doctor. I thought it was acne, fleas, bed bugs, a viral skin condition, a rash or something contagious. It now happens mainly from my stomach to my feet. But I have seen it on my arms and once on my face.
I'm thankful it's not as bad as some pictures posted on this website or in our Facebook support group ...yet. Now I beleive everything I have been suffering from is a direct result of the cryo illness. I beleive alcohol and cold make it worse. I do not know much about this condition and have never met anyone before Diane reached out to me. What is weird is I get hot easily too and don't do well in the heat. It's a confusing disease.
If you read this far you deserve a reward. Thank you for your time and for listening. Thank you for welcoming me into the Cryoglobulenemia Support Group I am glad I found you all.
Jessica Rielley, British Columbia
The first symptom that something was seriously wrong, was after I'd stayed up all night and then run errands all day. I got home, took off my pants and shoes, and my legs were swelled from the knee to the ankle and covered with bright red blood clots, dime and penny size. I panicked. It was 2004 maybe. I searched the internet for red spots and all I found was urticaria and Petechiae. I didn't have insurance and couldn't afford to have a dr charge me while he did extensive testing. The clots went away. I didn't take pictures. They came back when my legs were cold on a flight to Hawaii, only they were smaller and the legs didn't swell, they went away in a few days. I would get them over and over but never as bad as the first time.
I was Dx with Hep C Oct 2006 and found cryoglobulinemia in fact sheet at hcvadvocate.org. Made me cry tears of relief to know what caused the blood clots. I keep myself warm now. Multi layers of clothing. The clots left my shins green and purple and left brown discoloring on my lower legs. One day I got some massage oil and really wrung the skin on my shins - it hurt but somehow I knew that the only way was to hurt. Pretty soon, after doing this over and over, the shins started to look better. I have not had any cryo symptoms in a couple of years now. Well, at least not blood clots. Now I keep toe cramps and notice the bottom of my feet feel thick, like the circulation isn't the best. I massage them, take hot baths, and try to make sure I walk every day.
I have not done the chemo treatments for Hep C. No insurance, too expensive, and I'm not going to be a rat for a study. I have chosen to control the virus and the disease it causes by implementing a seriously fresh and highly nutritious plant based diet. I don't eat packaged foods, processed, junk, fast, salty, sugary, fatty foods and I don't smoke or drink or take drugs, prescription or street. I also take some supplements and other measures that I talk about on Daily Strength. I am 59, genotype 1A, platelets 100, bilirubin 1.3, and still I'm fairly functional, but unable to work a regular job. I get tired if I do too much, so I try to take it easy. I hike in the summer, and also garden. That's me, finding a large pumpkin in my raspberry bed!
So although I've never been diagnosed with cryoglobulinemia or vasculitis, I'm pretty certain I have it and it is under control through diet and supplements. If the blood clotting starts to be a problem, I take nattokinase, Wobenzym, vitamin C, and others. I'm not sure if you are interested in non-medical treatments, so if you're not, I understand. I am living proof they work.
Kathy Weger, UT
I was diagnosed with cryoglobulinemia in 2007. We discovered it when I went for my yearly blood tests for lupus and Raynaud's. I did not have any symptoms until the end of 2009 when I was up in northern UK on holiday and woke up in the middle of the night with a weird feeling in my right leg. The foot was freezing cold, numb and had red dots all over the leg and the foot. My doctors/consultants soon confirmed cryoglobulinemia and I ended up needing 4 months off from work.
The first year 2009-2010 my leg was very numb and weak and I spent lots of time going to physiotherapists for exercises as well as living on prednisone and azathioprine. My walking stick went with me everywhere......since then my cryo has been under control most of the time. Part of my right foot has permanent nerve tissue damage and I feel it especially in my job as a care support worker in a small hospital when it's busy and I'm on the feet all day! But with being positive and loving my job helping people it makes it so much easier to cope.
For all of us with cryo we know how essential it is to keep warm! Just the first chill going from summer in August into autumn in September can make me feel the difference. Sometimes I joke about "why did I find a man in UK" as here the winters are milder but also more damp. I feel it so much more then in my native frosty winters in Sweden where I come from because the cold is kind of dry so it does not feel so cold and raw in the air. I moved to the UK to be with my husband whom I LOVE ♥ and of course I do not regret it at all!
Last 2 months my ESR - erythrocyte sedimentation rate measured very high. ESR measures how much inflammation there is in the body. My consultant has told me due to my lupus and cryo it should read around 20-25 but it has been as high as 140. I have had at the same time rheumatic fever and rashes connected to the cryo but now last month it seems it has all settled down again to normal levels and the rashes are gone.
I am on plaquenil for life for my lupus, thankfully not on steroids - prednisone anymore. My consultant has reduced my azathioprine as well and hopefully in time I can come off that completely. I am working on getting back to the gym at least twice a week as I love swimming and gentle exercises (that help make my foot stronger).
I have good support from my husband and our 15 yr. old daughter Sally as well as the rest of our family and friends. It means so much to be one of the CVO group family!! About a year ago, I searched Facebook to see if there was a group for people with cryo and found the CVO group. Rochelle Ray added me and I am so thankful because I've met other wonderful members. It is a blessing to be a member of the important support group. ♥
With support from people with the same condition and sharing our knowledge it makes life so much easier. I haven't met anyone with cryo in person but feel so close to the CVO family ...God bless you all ♥
Susanna Lowe, England
My beautiful Mother. I miss her so much. She lost her battle to Cryo, March 25, 2003.
Mom was healthy as can be one minute, then tiny red spots appeared on her ankles in September of 2002 on and off until Christmas. Next she had flu like symptoms that caused her to be put in the hospital in January 2003. She was poked, probed, given multiple blood tests, and 3 hospitals later on March 18th she was diagnosed with Cryo. During that time fluid built around the lining of her heart, her kidneys failed, and finally she was intubated.
They mis-diagnosed her for 3 long agonizing months transferring her to several hospitals, in-patient ... Finally a couple weeks before she passed a wonderful Doctor doing rounds that normally ONLY worked in labs came across her chart. It was too late but at least we learned what horrible disease had literally eaten through her body like 'Pac Men'. It shut all her organs down, vein linings and she bled out.
I'm thankful to Diane for bringing awareness to this disease so more doctors will know about this NOW and hopefully increase the chances of much needed research so patients can get help faster and live their lives better with their loved ones. ❤
I just watched, "The Woman Whose Legs Turned Black" on Youtube. WOW, I learned alot and so many things seem to click thinking back with my mom. She always turned the AC off cause she would get abnormally cold and feel ill.
Thank You SO very much Diane for all your information and talking with me. I came across your site filling out a form for my dad for his Agent Orange. I believe people are put in our paths and in our lives for a reason. I look forward to reading, talking and helping in any way I can. You are 'Hero-like' to me. i know that sounds silly, but I can see and kinda know some of what you're going through and all along you are helping many people.
In Memory of Mae Mason-Kenyon
RIP March 2003
Flashback, 1988... Helping Mom get ready to marry Henry... I wish I could turn back time!! ❤❤❤
Her Birthday: Sept. 22, We honor her during our Cryo Awareness Month
Nancy Mason, Maryland
Thanks so much for including me. I am really looking forward to learning about cryo. I want to develop a treatment plan so that when I can't avoid a flare, I can minimize it.
I have no idea how long I've had this. I remember very clearly the day my symptoms first refused to let me continue ignoring them. I was standing on the bulkhead officiating turns at the Sunday morning session of the Indiana stage age group swimming championship at our son's last age group meet. My left arm just below my elbow HURT. I kept looking for a bug bite or a cut or a scratch. Or a burn. Nothing. was there, but it kept annoying me throughout the morning. We came home between prelims and finals to eat, rest, & take care of the dogs. I decided to take a nap instead. When my husband woke me I found a single tiny red spot on my arm where it hurt.
For finals I was part of a team who ran statistical analysis software on the swimmers' performances. I just kept feeling more and more odd. Achy, chest heaviness, nothing I could easily describe. When the session was over, I couldn't walk down the stairs so I had to sit and butt walk myself down. That was fun. Not! I couldn't stand up straight, could barely walk, could hardly breathe, & my head hurt so bad I could hardly think. I stopped in the restroom on the way to gather the family so we could go home, and scared the stuffing out of myself. From the waist down I was covered in petechiae. Not one or two. Not hundreds. Probably millions. I was covered from my ankles to my waist in tiny red spots.
Hubby (bless him) took me straight to urgent care where the doc on call gave me 2 doses of nebulized albuterol to relieve the asthma and help me breathe and 2 shots of prednisolone. He sent me home with a script for a nebulizer & albuterol and a Medrol dose pack. I had a couple more flares that spring, then they went away. We thought 'hmmm, that's odd' then got busy with life again and forgot about it.
In the fall my husband was diagnosed with his second primary cancer. There was a mishap during surgery and he spent nearly two months in ICU as they searched for the problem. I broke out again (apparently, cold and stress are my main triggers) pretty much the entire time he was in hospital. This time it was waist down, torso, and arms.
And so it continued. We had no idea what was going on. It came and went at will. Periodically, I’d break out with petechiae or purpura (petechiae’s older, bigger, scarier sibling). Other times, out of the blue, my chest would feel tight and heavy. Other times, I’d wheeze. My feet started having random bouts of freezing/burning/tingling pain. Random muscle and joint aches, pain, and numbness came and went. Without rhyme or reason. Fatigue has been my constant companion since my twenties, but there were times when I could barely lift my head off the pillow.
The scariest part was not knowing when it would happen again. It's nearly impossible to prepare for the unknown. It had to have a root cause; had to be knowable. The unknown is scary. Family doc had no idea what was going on. Could never get in while I was in full flare, so he never saw it and I think he thought I was making it up. Changed docs. The new doc is great, but had no idea either. At least he believes I have something going on that he can’t explain. He told me ‘idiopathic’ just meant he was an idiot for not being able to figure out what’s wrong with me. Gotta love a doctor with a sense of humor!
He sent me to a dermatologist who “knew” immediately what my problem was. No biopsies, no blood work, but he knew what I had. Even wrote it down for me so I could research it for myself. I’d see that my symptoms fit perfectly, then sent me home with 60 mgs of prednisone a day for a month with a couple refills. I researched the diagnosis he’d given me. Henoch-Schonlein Purpura didn’t really fit at all. Except for the petechiae, nothing fit. I was 5. They weren’t mostly on my bum, and I while my joints randomly ache (arthralgia) they’re not inflamed (arthritis), and I never get abdominal pain.
The prednisone was great for symptom relief but it also gave me the shakes really badly, and I regained the 25 pounds I’d worked so hard to lose the summer prior. When my sugars started running in the 200s, I decided it was enough of a good thing and tapered off the prednisone.
I started journaling. At first, every time I had a flare I noted the date, what prescriptions I was taking, what I’d eaten, how I felt. Over time trends began to appear. From trends, researching became more focused and I finally discovered cryo about a year ago. This is my current working hypothesis. It's the only thing I've found that makes sense of all my odd, seemingly unrelated symptoms.
For the past year I've started doing the doctor 'bounce', bouncing from this specialist to the next. I've finally bounced to a rheumatologist and am hopeful I can get some traction on a correct diagnosis. I think it's cryo, but if it's something else so be it...as long as we can get it identified and therefore find a treatment plan that will help alleviate or minimize the symptoms. And yes, I am fully aware symptom relief is rather like putting a Band-Aid on a broken arm, but at this point I'll take what I can get. Baby steps to victory is my new mantra. Since this keeps getting worse each year, next winter is pretty terrifying...and this winter hasn't quite let go yet.
It’s reassuring to know that I’m not alone in this journey. Being able to connect with others who are understanding and supportive makes it easier to accept. Those who share their knowledge and stories are so inspiring. Thanks!
Since 1988 Dr. Atamyan has been practicing Medicine in Nicosia with special interest in Internal Medicine, Cardiology and FMF with particular interest in rare diseases. He lives and practices in Nicosia Cyprus. He is happy to be a part of our group and support our members where he can with medical questions. Since 1989 Dr. Atamyan has offered his services voluntarily as the doctor in charge of the Melkonian Educational Institute and the Kalaydjian Rest Home for the Elderly.
In 1992 he was appointed by the United Nations (U.N.) Headquarters in New York as the U.N.'s Examining Physician in Cyprus. Dr.Vahakn Atamyan was elected as the Armenian Representative in the Parliament of Cyprus, and served in the house from October 2005 till May 2006.During that time he was a member of the education committee of the parliament and was appointed member of the advisory committee for private education by the Council of ministers. As a parliamentarian Dr. Atamyan represented the Cypriot Parliament to the celebrations for the 15th anniversary of the Armenian parliament.
During his chairmanship of the Nareg schools committee and as an MP, he succeeded to rebuild a new Nareg school in Limassol, created the Gymnasium (High school) and the students Hall for multipurpose activities in Nicosia, with the support of the ministry of education.
Social activities include.
*Chairman of the School Board Committee of the Armenian Elementary Schools "Nareg" in Cyprus from 2000–2006 and member since 1988.
*President of ARARAT AGBU Futsal Club from 1999-2009. Chairman of the Pan- Cyprian Futsal Club’s committee and member of the Futsal committee of the Cyprus Football Association 2007-2009.
*President of AGBU Club Nicosia chapter 2000-2001.
*Vice-President of the Board of the Medical Association of Nicosia - Kyrenia "IPPOKRATIS" from 2003-2006, and member since 1997.
*President of the Pan-Cyprian Medical Association for Pre-Registration Doctors 1986-1987.
*Member of the Board of trustees of the Melkonian Educational Institute 1992-2004.
*Member of AMIC "Armenian Medical International Congress" since 1992 and member of the International Society of Auto-Inflammatory Diseases, since 2010.
*Founding member of the Cyprus Society of Astronomy and Astrophysics ’IPPARCHOS’ in 2009.
*Member of the ‘Pension-Fund committee of Doctors’ 2009-2012.
*Appointed as Senior-Lecturer in Medicine at the St. Georges’ Medical School / University of Nicosia in 2012.
*Participated in many Medical conferences and seminars both in Cyprus and abroad and published medical articles in medical journals and on the Internet.
Dr. Atamyan is fluent in Armenian, Greek, English and Bulgarian and his interests are tennis, futsal, football, internet, astronomy, music and reading. He is married and has three daughters and two sons.
Dr. Vahakn (Vick) N. Atamyan MB, MD, GP, Cyprus
Cryo Patient Stories
Founder/President, Diane Dike, Ph.D. and her Service Dog, Gracie
Embracing Brokenness 25+ years of overcoming Cryoglobulinemia Vasculitis
My body went numb as I collapsed. The doctor stammered, “Are you alright?” I had no answer. Pain became my constant companion at the age of twenty-three. The words, "incurable, life threatening, chronic" overwhelmed me. When the attacks came with sudden vengeance, all I could do was helplessly watch my body deteriorate. Flu-like symptoms made working, socializing, shopping, and performing the simplest of daily chores unbearable. In addition, insomnia and the gnawing pain of fibromyalgia that began when I was 15 became more intense. I cried out, “God, help me!”
I lost everything that mattered. Divorce and homelessness led to suicide ideation and confinement in a psychiatric hospital. I prayed for death to come quickly. I didn’t care how. God answered me by directing my focus from my misery to Jesus. The Bible taught me that peace could be mine despite the storm that surrounded me. Finally, embracing brokenness, I saw my life as God saw it—worthy to be lived. I met a hero named Paul. He proposed less than a month after our first date. Fifteen years later we are still beating challenges together. In 2005, we rescued a broken dog. She rescued me back by becoming the world's first rescued Italian greyhound service dog helping a woman with an incurable blood disease. Together we go where no woman and dog have gone before visiting prisons, schools, orphanages, hospitals, wherever we are invited to share our message of hope and songs. The good news, I haven’t been hospitalized since we rescued each other. She’s been the best medicine with no negative side-effects.
There are still times of despair. Recently as I battled what appeared to be kidney failure, pain shivered through my body, I shifted Gracie, her closeness creating lifesaving heat. Teetering in and out of coherency, wondering how much more agony my body could take? "Oh Lord," I prayed, tears pooling around my lashes, "how am I supposed to serve You when I’m so broken? This is not how I dreamed it would be..." I burrowed into my damp pillowcase, praying for help. Just then, I beheld a vision, a room, its lone occupant a pedestal displaying a crystal bowl. Light shimmered down upon its beauty, but as I approached I saw the bowl was deeply cracked. A water pitcher appeared, and in dismay I watched sparkling water cascade into the basin and immediately stream out through the holes and cracks. I sighed. "Yes, Lord, that’s me. Broken. A useless vessel; a terrible waste." Then the room went dark. Slowly the glory of the Lord emerged and emanated from below the pedestal and beamed up through it toward the bowl, which was now upside down. Within moments, the room filled with brilliance. Yet it was through the broken parts that He shined the brightest.
I understood. In spite of and because of my weakness He is able. He is strong. God continues to help me survive the darkness so I can be a light to shine for His glory. He likes to breath life through the most unlikely of candidates. Whereas my brokenness once dragged me into the pit, it now lifts me up into the open arms of a loving God who allows me to help people I may never have met. The disease hasn't left yet, but sometimes wellness isn't the absence of sickness. By letting my mess become my message and my tests my testimony, day by day, I’m an overcomer and I remind people they can too! Like Peter, when I keep my eyes on Jesus and not the storm, I can do more than I've ever dreamed. I’m strong and courageous in spite of persistent challenges because I’ve learned the key to happiness: focusing on the needs of others, just as Jesus did.
I believe in miracles. Gracie, Paul and all who live with uncommon courage no matter what, are proof.