Epstien Bar Virus, Neuropathy And Pots

[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

[Donna F]

Hi

I have not actually been diag with the virus although i would love to know more about it, as I have had left sided weakness along with all the others, i am multi symptom have a pacemaker, etc. I am curious about this though because drs have been stunned with the left side weakness, and thought at one time i had a mild stroke although mri confirmed not. So would give me an idea of something to ? my new drs about. Does the meds help and what symptoms besides left side weakness, etc did u have orig. that gave u this diagnosis?

And i do have pots as well, so sounds like i may have this so wondering , guess hoping to find answers, like u r to i am sure

Thanks

donna

[MNsue]

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

[Donna F]

Rhonda,

Thanks for the info, I have never been actually diag with fatigue syndrome, but if i had to diagnose myself i would say that i have it, i never have any energy, if i sweep the kitchen on a good day i will have the cold sweats, etc. I have had low almost no energy since my teen yrs. Its very frustrating, i have a neur. he is basically to put it blunt a drug doc, he would be a junkies fav doc. He pres me enough meds to kill 10 people and yet has never diag me with a thing. Only thing i take is my florinef, BB, Lopid (chol.),Xanax for anxiety and lately been on lortab for fibromyalgia. But basically hoping the new doc i started to last week will help. Keep in touch and maybe i can give them ideas that work for u as it sounds like we have some similarites.

Thanks

donna

[mcpucho]

High dose (2 grams per kilo of bodyweight) IVIG has gotten rid of 95% of my neuropathy, which was VERY bad. Including terrible muscle twitching throughout my body.

[Tessa]

Hi Rhonda

What an excellent post you have started. I was wondering about EBV but never thought it could be related with POTS.

On one of my blood tests carried out by my Internist, I had a positive result for Eipstein Barr Virus.

Of course I felt scared and shocked. I had no idea what EBV was and was looking forward to hearing from my GP. When we met, he said that the positive EBV I had, was nothing to worry about, as (according to him) it is something that many people have, but are unaware, has no impact on our health and only means that I have gone through the virus when I was a child... But that it is over and not active.

Now that you mention this, I look into my blood results and wonder if he was right.

It clearly shows:

Eipstein Barr VCA IgG positive.

Is this the same virus that you are referering to?

Hughs,

Tessa