MNsue

You are in my thoughts and prayers. I hope all goes well with the biopsy and the results. Rhonda

I hope your fever goes away soon. I am also on immune suppresants and had a fever recently that lasted over a week. I think it was just a virus, as it went away when I completed the antibiotics. I also had a very high heart rate, and was basically bed ridden. No fun!!! I hope yours resolves itself soon. Thinking of you, Rhonda

Welcome, It is good to see another IVIG user on the site. If your up to it, I would love to exchange IVIG info. Rhonda

willows, Sorry to hear about the diagnosis. I just wanted to add that I have been very ill the last 2 weeks, and my eyes have not worked well. I used to take a beginning yoga class (I called it yoga for wimps- just my speed) and the yoga instructor suggested that I lay on my back with by legs on the wall and try and get my behind as close to the wall as possible. It sounds a lot like what your doctor is recommending, however not very convenient if you leave the house. I hope your package was a good one.

Pat, You may be right, I have had 16 years to filter out the bad eggs and surround myself with the better ones. I lost many friends in the first 5 years of my illness. They could not accept that I was no longer the life of the party with lots of energy. It has taken me many years to find friends that could understand. I have found more support as the years go by. It took a long time for my family to accept that I was ill. I have a brother who still thinks I am faking it. Maybe I am just hopeful that we become more compassionate as we age. Rhonda

We went to Disney world a few years ago. You can rent a wheel chair at the front gates of Disney. It was very helpful for me. We stayed on the resort property, so I could go back and rest as needed. Luckily my husband is a good sport and would take the kids in the afternoon while I rested in the hotel room. I tend to get sick on airplanes, so I take a lot of airborne and suck on cold ease tablets to prevent a virus. I also wear a mask on the airplane to help protect me from getting sick. I took something to help me sleep while I was away. I tend to do better if I can get a good nights rest. You can bring backpacks into the park, so I would suggest bringing a few water bottles. You can refill them in the park. I only went on the very tame rides, because even that would cause issues. I hope you can feel well on your trip. Rhonda

Sorry that your co-worker was so inconsiderate. What we really need is support and not judgment. I am thankful for my friends and family that understand that some days I am desperate to feel better, and yes a little obsessed. We need to be a little obsessed because we are fighting for a better quality of life. As you mentioned, it is not something any of us can walk away from. I think it is admirable to fight this disease with everything you have. You are a valuable source of information on this web-site, and many of us have benefited from your tenacity!! When I was younger, I ran into this kind of issue much more. As I am getting older (now 40) more people my age have seen chronic illness in themselves and their close family members. It seems that more compassion surrounds me each year. I also used to wish we could make our illness into a game of tag, and give the offending person as taste of our illness for a week. Maybe they would become more compassionate. Rhonda

I took B12 shots a number of years ago. They really did not change much for me. I do think the adrenal support vitamin I take with a number of b vitamins has been helpful over the years. It has not been a cure, but I notice if I go without it for a while. I did have my B12 levels take, however they were on the low normal range. Rhonda

I started IVIG last week Monday and Tuesday, Since the second infusion I have been so sick. I am wondering if anyone else had the same issues? I developed a spinal headache on Tuesday so they had to give me predinsone to help control the pain. Unfortunately the headache lasted until Sunday. On Friday I started to run a fever of 101. They gave me antibiotics to help fight off any infection, and the fever has went away, however my body has shut down from the all stress. I feel so sick and can't get out of bed except for a few minutes at a time. I am afraid to try the IVIG again, but it is the only treatment left for my persistent left side weakness. If anyone has had experience with IVIG, I would love to hear your thoughts. Rhonda

I have a hard time keeping warm. My body temperature is typically low. When I was in the hopsital delivering my second daughter I became hypothermic. I felt very flu like at the time. Since then I have had a number of times when I think I should have a fever, and my body temp is low. I use a heating pad to bring my temp up now when I feel like this, and it helps a bit. I will also run a warm bath. I will also sweat like crazy when my temp is low. It is so strange. Rhonda

Thank you Emily and Melissa for the links. They were very helpful. Melissa, I had 5 bottles over 6 hours on Monday and another 5 bottles over 7 hours on Tuesday. Thanks for posting dispite being so ill. I think of you often. I am starting to get some relief from the headache this evening, however I have had to take quite a bit of prednisone to keep it in check. I get a lot of back & hip pain with the hydrocortisone they gave me to control the headache. I was hoping to avoid the back and hip pain issue by moving to IVIG. No Pain No Gain -- It is hard to tell if I have improved. The headache and steroids scamble my brain. Rhonda

I started IVIG on monday. I am having a hard time getting rid of the spinal headache that can be a side effect. My MD said this should get better with future treatments. Anyone else on IVIG? Did the headaches get better with time? Did your POTS or neuropathy improve? If so, how long did it take?

Very interesting. Thanks for posting this. Rhonda

Is anyone supressing their period over age 40? I also have a lot of tachy the two weeks prior to my period. Is there and issue with being over 40 and doing this? I am on so many med's I have been slow to ask about this before. It would be nice to level things off a bit. Thanks, Rhonda

I noticed the same issue right before my last flare with my neurological symptoms. My POTS was bad, but I was trying to live in the world of denial for a while over the holidays. I was noticing memory loss, then my left side decided to take a holiday. The good news is that my memory is better now. I dont feel like I have scambled eggs for brains. I hope this passes for you. Rhonda

Mellisa, I am so glad to hear that you have had a bit of relief. You have been in my prayes, and I hope each day you can gain strength and better health. Rhonda

Morgan, Sorry to hear you lost your MD. When you are so ill, you really need someone in your corner. You are in my thoughts. Rhonda

I recently went to a doctor that explained that you can have varying levels of different types of vitamin D. He suggessed that I take vitamin D3. I take a product called ISO D because I am so sensitive to everything, and the ISO D can be easier on your system. So far, I have had no problems with it. Since I have neurological symptoms that look alot like MS, I took note when a recent study showed that MS patients did better when taking Vitamin D. It is an interesting coinsidence that in the winter when we have the least amount of sun and are most vitamin D deficient MS patients have a tendency to flare more. Vitamin D is also good for the immune system. Rhonda

I do not have muscle pain, however I do have peripheral nerve issues. I have weakness in my left arm, hip and leg. Over christmas, the left side of my face went numb and started to droop. I have been to the neurologist, and my EMG's and MRI's come out fine, however I look like someone with MS. I work with an immunologist because I have responded to immuno therapy in the past. I would say that my neurological symptoms get worse when I have a cold or infection. I think seeing a good neurologist is a great idea. I was told that a spinal tap is a bad idea for people with POTS. We end up with bad spinal headaches for a long time. Luckily I was spared that test. My neurologist also said he has seen two other people with POTS, CFS and these neuologial symptoms. Nothing showed up on their MRI's, EMG's or spinal taps. I wish someone would study this. Rhonda

I have found that taking probiotics (acidophilis with biffadis) every day helps. It prevents yeast infections for me. They also help with my stomach issues. Good Luck, Rhonda

Welcome Heather. I was also diagnosed with CFS 16 years ago after Mono. I had a flare up last December and was diagnosed with POTS a year ago this month. I have many of the same symptoms. The night time tachy is pretty persistant for me, however I think florinif has helped a bit with this. I hope you can find some help with your symptoms. I have found it to be very up and down over the last year. Take care, Rhonda

I have been having issues with left sided weakness since christmas along with tachycardia. Two weeks ago, my left eye muscles decided to join my left arm and left leg in their protest to work properly. I have been to the neurologist, and nothing shows up on MRI's or EMG's. In the past high dose steroids have restored order, however my body has decided to boycot these as well. I believe my next step is IVIG. Has IVIG been helpful to others? Can anyone else give me the up's and downs of this treatment. I wish someone would study the combination of POTS and undiagnosable muscle weakness. Rhonda

I would suggest having your doctor follow-up with Mayo. I went through the same thing about a year ago, and they turned me down without being put on a waiting list. I wish I would have asked my doctors to push a bit maybe it would have made a difference. Good Luck, Your daugher is lucky to have a mom fighting for her. Rhonda.

Donna, I am sorry that you are going through such a difficult time. I will keep you and your family in my prayers. It may be worth a visit to Mayo, just to get some more answers. I have met with a number of physicians that understand POTS, and yet they can't tell me how my disease will respond in the future. I have a good friend who has been told she would not live the year due to her cancer and various illnesses, yet she is still here and plugging away. She always tells me it is her goal to prove the Dr.'s wrong. She has a post-it note on her mirror to remind her to tell herself each day to say "I am getting stronger and healthier." It is my hope that you will get stronger each day and prove the doctors wrong. Rhonda

Donna, When I was 24 I was diagnosed with chronic fatigue syndrome after Mono. I am now 40 and still have an active EBV test. There is some evidence that EBV attacks the immune system and causes it to disfunction. I accidentally discovered that I would go into remission with steroids. My MD prescribed prednisone for sinus infections, and my POTS (then undiagnosed) would go into remission. The neuropathy is relatively new. It started last year when I went a year without a sinus infection and prednisone. I was able to get almost 100% of my strenght back by working with an immunologist this year, however the POTS has remained a constant issue dispite treatment. I suspect I must have some nerve damage in my autonomic nervous system. I do not have a pacemaker, however I have crazy heart rates at night (very slow to very fast) My MRI's and EMG's have been normal, however I go back to the neurologist this week for more testing. I don't think they have a clear marker to explain my issues. We are what they are like to call "interesting". Rhonda