MNsue

Hello everyone, Does anyone else have an active Epstein Bar Virus, Neuropathy (left sided weakness for me) and POTS? I am having a flare with my neuropathy and I am having a hard time tolerating the high dose steroids that keep my left side functional. My Dr. has discussed IVIG, however we have not yet submitted it for insurance approval. Has IVIG been helpful to others? Anyone else have neuropathy issues. Any ideas would be great. Thanks for your help. Rhonda

Melissa, Get well soon. I will keep you in my thoughts and prayers. Rhonda

So sorry to hear your family is so ill. I will keep you in my thoughts. Rhonda

I did not tolerate thyroid dose changes very well until I started using immune suppressants. I have hashimotos with very high anit-body levels. I think when my dose was changed in the past, it triggered an anti-body response and now that my immune system is surpressed it doesn't cause as many problems. I just changed my dose for the first time because my thyroid levels were too high, and I did not have as many problems. It is very strange how this all works. It would be a good research question. Good Luck. Rhonda

I can relate. I have had many of the same symptoms for 16 years. I currently work with an immunologist because I developed weakness on my left side. The IV steroids and Cell Cept have kept the weakness from getting worse. We have not found any antibody markers besides very high tyroid antibodies. I was diagnosed with chronic fatigue syndrome when I was 24 after having mono, and have an active Epstine Bar Virus. Over the years I have develped usuall immune disfunctions. I am thankful for the immunologist I work with, because I don't think I would be walking today if he did not take a risk and treat me without an antibody marker. I was diagnosed with POTS for the first time one year ago. The Midodrine helps me to funtion better on a daily basis. It is very up and down for me. I was great in November (Walking daily up to 2 miles) and then had a major flare in December. I am slowing regaining strength again in my left side. I don't know if I will ever get a diagnosis, I try to focus on having good treatment options. It gives me comphort to know that there are many things we can try. Our immune systems are so complicated. Let's hope someday they will figure out a solution. Rhonda

I had a Dr. that explained that when my battery was low I needed to recharge it by resting. I find that when I am not doing well, bed rest helps me. I think it is a balance. A little bed rest a little activity. If only life would work on my body's battery level, then I might be able to find a balance. Take care

Are you on any form of steroids? I get the same bone pain when taking high dose steroids, and have even noticed a dull ache from Florinif. Just a thought. Rhonda

I was told recently by my immunologist that "Quinilin" based antibiotics mess with your electical system, and should be avoided by POTS patients. I was on Leviquin and I know I could not tolerate it. Also Cipro was bad. I thought it was good information. I hope it helps others. Rhonda

I have this problem frequently since my POTS flared up last December. I take clonazepam at night to keep it under control. I notice that it fluctuates with my cycle. I had a 24 hour halter monitor last spring, and it showed a slow HR and then it would shoot up to 165 toward morning. If I don't take clonazepam, I will have multiple episodes of tachycardia at night. I would wake up exhausted as a result. The clonazepam lasts until about 4 or 5 am, so I can at least get some restful sleep. I am meeting with a new cardiologist next week and will be asking him about this, as it is so persistant. I also feel like I wake up short of breath throught the night. Does that happen to you. Clonazepam is an addicitive drug, so I am very careful to use as little as possible. I wish I had more answers. Good Luck, Rhonda

Sara, I have had a lot of left side weakness since my latest episode of POTS. Since that time I have started treatment with an immunologist to treat what we believe is an underlying autoimmune disfunction. It has helped with the weakness. I have been able to tolerate physical therapy as well. I am stable and slowing getting stronger. I don't know if I will ever be "Normal" but I can work part-time from home now. Good Luck. Rhonda

Sorry to hear you were turned away from Mayo. I was misdiagnosed twice at Mayo over the last 15 years, and finally had a TTT done in March to diagnose POTS. My MD did not know what to do with me, so she sent my records and a letter to mayo, and I was also turned away. I was able to see another physician in MN who specializes in POTS reseach abroad. His comment to me about being turned away from Mayo is "I don't know who gets in to see Dr. Low, since all my patients have been turned away" NICE!!! Mayo is not the answer. They are good a diagnosis, but not at treatment. If they don't have a protocol, and a study for your condition, you are out of luck. My BP did not drop, and my HR increased like yours, and I was told I have POTS by the physician at the U of M. Good Luck finding another MD. Rhonda

I have had POTS since I was 24, I am now 40. I also was diagnosed in February of this year. I have had periods of complete remission, and some unrelenting bad spells (Due to non-treatment). We are pretty sure my POTS is the results of the ebstein barr virus messing with my immune system. I am working with an immunologist with hopes of improving the neuropathy that developed this year. When I was first diagnosed, I spent a lot of time wondering what was going to happen to me and sometimes I still do. I have a friend with MS, and she has helped me to understand that everyone's illness takes its own path. The doctors can not predict how her MS will impact her as she ages, just as I think our doctors can not predict the future of our illness. I wish for a cure, but in the meantime, I try and make every good day count. Rhonda

I developed Rosacia after starting Midodrine. I believe all the flushing makes my Rosacia worse. I had great skin prior, one more blow to vanity. Rosacia does look like acne, and it can burn. Good Luck. Mine got beter with time and colder temps. Rhonda

I have worked with a natrual path doctor for 11 years on and off. She was not able to cure me however, she has really helped my diagestive issues over the years. She was trained in western and alternative medicine. A real plus for me since I use both. I also agree that you want to work with someone that keeps up on the most recent studies, and looks for each ingredient to make sure it works with you current drugs. If the doctors don't really know what is going on with my body, I go to her for a second opinion. She was the one that noticed my BP dropping and got the ball rolling to do a tilt table exam after 15 year of this issue. I live in MN and we have a natural care center in one of our hospitals. She works there. I think it is a great combination. Ask around. Find out about the amount of training and type of training they have had. We are tricky patients to work with, you want someone good. Rhonda

I notice that, since my latest flare, I will be presenting in frount of a client, My tachy gets crazy, I can hardly speak because I am out of breath, and My chest is bright red. I have done these meeting for years on don't feel anxious. I think when my body demands more adrenaline to keep me going it tends to happen. I have to go home and pass out on the couch for two hours every time it happens. It is a little crazy. Rhonda

I am currently taking 1,000 mg of IV Prednesone once a month for 3 months and 500 mg of IV prednesone for the next 3 months. It has helped my left side weakness, however in the week before my treatment I notice my left side starts to tingle more. I am also on Cell Cept an immune system supressant that will hopefully take over for the prednesone. I was told by my immunologist that the IV has less long term side effects. It is not much fun, but I'm not walking funny anymore. I don't know if it is helping my POTS. I don't have the nausea issues you and others face. I hope you start to feel better. Rhonda

My immunologist told me about a new form of injectable IVIG they are giving their patients with dysautonomia. I believe it is injected sub Q every other day. It is a pretty large amount (about a vial according to the nurse) It helps with the headaches and other side effects and keep the patient from having monthly flare before the next IVIG treatment. I am still taking monthly steroid infusions along with Cell Cept. I have notced a big change in my left side weakness. I had about a week where I was taking very little midodrine. I am hopeful that this will continue to keep me working. I hope this is helpful. Rhonda

I also have the cold and adrenaline rushes. They are no fun. Usually I am in a cold sweat. I have taken to wearing around a heating pad on bad days. Hang in there. Rhonda

16 years... It started with Mono and I was just diagnosed in Feb. I have had good and bad stretches over the years. I have worked most of the time, however just part time. Good Luck

Congratulation on going back to work. I love the distraction that work provides, however, it can really knock me out. Best of Luck. It must be tough to have such a physically demanding job. I am lucky that I can work from home when I don't feel well. I am impressed that you can do your job. We are a tough bunch!!! Rhonda

I have been having a bad POTS weekend. I had about 3 night of tachycardia most of the night, then yesterday morning after a better night's sleep, I open my eyes, and the room won't stop spinning. I close my eyes and think this is strange, and it keeps going and going. I finally sit up in bed and it is better. I was a little off balance in the morning, but as the day progressed it got better. I had the same thing happen this morning. I am so fatigued, I don't want to get out of bed and when I do the tachcardia starts up. OH how strange. This is the first time this has happened to me. I know others are dizzy, but I thought it was while they were upright not laying down. Thanks for all your ideas. Rhonda

You sound a lot like me. I am working with an immunologist, and am getting better. I am now taking Cell Cept (also a drug used on MG in trials) It took about 6 weeks to kick in, but the numbness and weakness on my left side is much better, and I am taking less Midodrine. I am not perfect, but I am better. Good Luck. Rhonda

Sorry to hear you are having such a hard time. I wish you lived in MN, I could give you the name of my physician. Before that I had a number of bad doc experiences. I work in the insurance industry, and have found that some companies rate MD's on their web sites and have patient advocates. Maybe your insurance company can give you some ideas on good MD's in your area. I have also found my nurse friends know who is good as well. If your MD is not interested in calling you back, your insurance company is interested in keeping you out of the hospital. Do you have a nurse line or nurse manager? They may put pressure on the doctors office. Good Luck. Rhonda

I am currently working with an immunologist. I am on Cell Cept and it has been helping the neuropathy that occured with my most recent POTS flare. I was almost normal for 3 years taking prednesone once every 6 months for sinus infections. I had the worst flare of my life in December after not having prednesone for about 9 months. The POTS has not gone away, but the weakness and numbness on my left side has. I have am happy to have someone trying to adress my immune system issues. I hope my POTS will improve with more time. Good Luck. Rhonda

I tell my husband that I am chemically sustained by Midodrine. It is a real life saver. I went 15 years undiagnosed. I can now function most days. I am not perfect, but I am definitly better. Rhonda