Sarah 2002 USA

This is long, but I’m a writer at heart, sorry! Hi, I am 33 yr old mother of two from California. I had Lupus full blown about 7 years. Previous to that, I had eating disorders, (anorexia/bulimia) from ages 15-18, which I now hear did some damage to the immune system, brain, kidneys, heart, liver, stomach, teeth,etc. After that, my health went downhill, even though I recovered from the eating disorders. Those young girls don’t realize what they are doing, wish I had. Bye age 20, my thyroid began to fail. By age 23, I was having severe symptoms of chronic fatigue and environmental sensitivities and food sensitivities. I began to have chronic tendonitis and sprains of the knees and separated shoulder, etc. Seemed like everything was weak and always getting injured so easily. I began to take grape seed extract, not knowing I had lupus, and it helped me a lot with some of that. Then my fingers began to swell, and the fatigue was so hard to deal with. I was working a full-time, stressful executive admin. assistant job, and it was rough. I investigated at the health foods store, and I changed my diet, which helped some. Part of what may have caused the Lupus to flare up so badly was I was also abusing echinacea, and herb used to bolster the immune system when you are sick. I was using tea, and it had no warnings on the box to take only when you are sick, for 8 days or so at most. I took it for months, and it kept me from catching colds, but it also seemed to overstimulate my immune system. Then 6 years ago with my first pregnancy, I developed full-blown Lupus, which was very crippling and painful. I had to work full-time, as a temp, had just gotten married, and had no insurance but for the pregnancy. The doctors did nothing to help me. They vaguely mentioned Lupus, but knew I didn’t have coverage, and I never heard much of it after that. Part of the problem with getting a diagnosis was that my inflammation always seemed to calm down when I slept and then it would come back in the afternoon and evening, crippling me again. So the doctors never got to see what I was complaining about, since they all want to see you early in the day. I would get so bad, I walked like I was 80 years old, slowly and painfully, people would always stare at this pregnant girl limping. I couldn’t straighten my elbow for months, it was so painful, full of water. Then I had the baby, and I was so scared because my wrists and elbows were bad and sometimes I didn’t know how I’d pick him up out of the crib to nurse him without dropping him. I was alone without assistance. Still didn’t know I had Lupus. I also had a very stressful marriage and a stepdaughter who had been abused by many men and was mentally ill and acting out a lot at home and school, she ended up in mental hospitals, jail, and then in a group home by age 12. My soon to be ex husband was never home at all, and began to drink again, and other unhealthy habits. He never would get a job so I couldn’t go to the doctor, and I told him I was dying, I could feel it, but he didn’t care. Oh well, God did. So then I had my second child, and during the pregnancy and while nursing him for 17 months, I seemed to have a quieting down of the Lupus. I was so glad, because I was fearful after my first pregnancy that I would be crippled again. Then when I stopped nursing him, about 2 years ago, the lupus came back with a vengeance, slowly but surely. Turned out I was also taking alfalfa tablets, for the vitamins and minerals, and that is a big NO-NO if you have rheumatic illness, causes flaring. Well, thank God after a few months I ran out and suddenly had no desire to buy more. After I stopped using it, a lot of my inflammation greatly decreased. Then, around Nov. 1999, I began to have kidney pain, and many signs something was really wrong. My MD, who had lab tests showing an ANA of 1280 still had taken no action. I guess I was so used to suffering I didn’t know I needed medical attention. I used to have to be carried to bed, it was so bad in the evening, I just thought that was the way it was for me. Well, my MD tried to tell me I must just have kidney stones, though I disputed it, since it didn’t feel like that. Then my entire lymphatic system flared up horribly around Dec.1999 and he finally sent me to a rheumatologist. They thought I maybe had lymphoma, but took a bunch of labs rather than biopsying the huge lumps on my neck (thank God). I had to then wait almost a month for the diagnosis, sitting on pins and needles, over the holidays. I had a strong feeling of doom the entire time. Over New Year’s, I got the flu, and with Lupus, that’s not good. It was horrible, my disease flared up. I was so sick, I couldn’t make it to the rheumy for my lab results. He called me the next day in a panic, told me to drive downtown immediately to the emergency room to give a urine sample, since some of the labs weren’t completed, and he thought I may already be having kidney failure. Here I was thinking I was just a little sick, and he hit me with a big one. Well, I was 33 with two small boys, didn’t need to die just yet. I ran downtown, and then he called me and told me it could wait until he saw me because my kidneys were still working. Thank God! So then he tells me I have to start 60 mg prednisone right away, tells me nothing of protecting my stomach,or bones. I didn’t take it, I knew about that nasty drug. So later he fought me up to 35 mg. I was already on the Lupus foundation bulletin boards and learing a lot of things that didn’t sound so great about the usual treatments. The prednisone made me severely hypo-manic, I slept 4 hours a night, talked and sent long e-mails to everyone incessantly, I was a total nut-job from the medications. No one could stand me. It was a nightmare. I ended up with a breakdown after a month like that from exhaustion. They kept adding drug after drug to my regime, most of which made me very ill, and a couple gave me reactions that almost killed me. I was in the ambulance and the ER about twice a week. Along with my diagnosis of Lupus, came Sjogrens, hair loss, weight loss, brain fog, clotting disorders, vasculitis, stroke/TIA (and now bad headaches), low red and white counts, high sed rate (76), bad face rashes, fevers, nausea, weakness, etc. I was a total wreck, and my body could not take all those drugs. Then in Feb 2000, they gave me a kidney biopsy, which just about ruined my bad kidney (one is a little worse) and I bled internally since the Lupus didn’t let me clot right. I had to have a double transfusion,which was excruciatingly painful, and took 4 hours. My arm didn’t like that blood at all. They told me I had class IV nephritis, and was doomed to kidney failure in the future. They wanted me to stay on the prednisone to bolster my white counts while they knocked them back down monthly with Cytoxan chemo infusions. I told them they were nuts, but everyone pressured me to do it, so I took the first chemo. After that, I had a really bad feeling about continuing. God told me if I did, I was missing out on something better. I meet Marge at the Lupus bulletin boards, thank God! She was talking about AP, and it sure sounded good to me! I asked my rheumy to help me, and he laughed at me and insulted me, was very insensitive and unprofessional. So I never saw him again. I was sick of the hospital and being a lab rat anyhow. Never have been able to tolerate drugs or chemicals, so I was already into alternative treatments. I began to pray hard and asked my friends to pray that my MD would help me. Sure enough, he gave me my prescription for minocin. I started immediately to reduce the prednisone (which I had already been doing anyway) and taking the pelletized minocin 50 mg 3x/week. Before I began the minocin, I did take a dose of 900 mg. Clindamycin one a week for two weeks, just to get me started. Then after that I started my magical little yellow pills! lol. I couldn’t get them covered on insurance, they only covered generics, so I had to go to the Costco warehouse club store, but it was only $36 for 100 of the 50mg pills, thank God. I also began taking a supplement I read about that is supposed to help the lupus, and that may be part of why I responded so well. Not to mention a whole lot of people praying for me, dedicatedly. As soon as I started the minocin, something began to happen. I noticed that there was a redness and a little soreness in different places each time I took it. Some of the places I could feel/see the medicine working, were spots where I had not had inflammation for some time, but had been bad in the past. It’s like the mycoplasma was still just sitting in there, waiting for next time. That redness didn’t usually happen with the Lupus, so I knew that the minocin was getting in there, eating up the mycoplasma! woo hoo! Finally, a drug that kills the problem instead of the patient! haha. I noticed this herx affect usually about 15 hours after my dose. I also took MSM for a while to clean out my system, as the doctor suggested, and changed to a much healthier diet, a lot of vegetarian, less wheat and dairy, and also tried to stick to diet for my blood-type. Started really avoiding salt and sugar, too. I began to improve, no more fevers, little by little, less brain fog, better sleep, more energy, less inflammation, rashes cleared up, hair started growing back, gaining weight, day by day, getting stronger. What a joy to have hope. After my diagnosis, I was in total shock for a while, and I sure did need some good news. AP was just that. Then, 8 months later (last month), my kidney was bugging me so I went to the doctor for labs. Turned out, it was actually GOOD news for a change. Before that, when I had labs done I didn’t see a whole lot of change, it took some time. My sed rate had fallen from 76 to 29, my blood work for the kidneys had fallen within NORMAL ranges!!!! That word “NORMAL” meant more to me than anything I’d heard in a loooong time! Just recently, I began walking again, little by little. Still have to take naps every day, and not overdo it. I can have days when I need to not do so much, or my poor brain gives me a hard time (haha). It’s sometimes so hard to believe where I was a year ago, and I feel like I really escaped by the seat of my pants from all those toxic drugs, and even death or permanent disablement. It almost seems like a dream, but I know it wasn’t. I actually can consider going back to work again in the future, and am able to be in my children’s lives again, don’t have to sit back and wonder if I’ll ever be good for anything again. Well, that’s my story. In a way, it’s almost a blessing I didn’t get a true diagnosis all those years ago when it was so bad, because the AP was not something I probably would have known about, and I am glad I didn’t have to spend all those years on the drugs so many of the other patients have suffered through. A blessing in disguise. God is so very good to me.

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