SHINGLES...help

[chelsmom]

Hi Holly,

I'm sorry to hear about your shingles.  I hadn't heard that there is a possible connection between shingles and AN's as Capt. Deb mentioned either.  I wonder if there are any studies or information on this.  My daughter, Chelsea, also had shingles when she was in the 8th grade, about 13 years old.  She was given anti-viral meds and vicodin for pain.  When one of my clients that's a Doctor found out about her situation he said she needed to get off the anti-viral meds and take mega doses of vitamin C.  He felt the meds were too harsh and said even in his elderly patients he avoided these meds if possible and only used them for HIV cases.  Anyway, she started with 2000mg vit-C for 1 week then 1500mg for 2nd week and 1000mg for another 30 days.  It worked and the shingles cleared up not to say they wouldn't have with the meds but I was glad she wasn't taking them. 

Her pain was not as bad as yours sounds.  She would soak in cool water with an oatmeal based soak.  I think it was Aveeno.  When the rash first started to appear I figured it was just a rash and had her use cortizone-10.  After several days when the rash had spread I took her to the doctors and was told that cortizone was the worst thing she could have put on it.  I guess it's good to find out from the docs whats best.

I sure hope you get some relief soon.  You have been through so much and really need a break.

Take care....Michelle

[linnilue]

As you can see, this email comes late in the day, it has been a bad one, unbeleivable pain, especially in/near my knee and it is so swollen.  Went and saw a miserable doc and he said it was neuropathic pain and taake Lyrica, but after reading about it and talking to my daughter (she too is a nurse and has aptients on this drug) we agreed that this drug was not good for me.  The doctor tole me that I was "too young" for this much pain, that only the elderly and very immnuosupressed or very ill patients had this amount of pain and he jsut didn't understand it."  He then gave me this wierd look and I tried to explain how ill I had been for >two years (my chart was in hip lap) and he cut me off.  I left in tears.  My doctor is out for two months on maternity leave so I'm in a tough spot here.  But, Michele, I will start taking the vitamin c tomorrow, it can't hurt.  I can't beleive chelsea had it when she was so young, maybe there is a correlation.  I think I'll have my husband do a search on medline.  Thank you for thinking of me,  Holly

[linnilue]

O.K. everybody, listen up here.  My husband did a search lat night on the link between shingles and AN's.  There appears to be a link post-op wihich involves facial nerve and shingles.  There is a sugestion out of France, I beleive that patients who have AN surgery should be given a course of antiviral meds (valtrex, acyclovir,etc,) Immediately following surgery because there is an increased incidence of shingles (along the facial nerve) during that time.  It makes sense because the virus lies dormant in the ganglia of the spinal canal.   Thought you should all know this.  Holly       

[Boppie]

My neurosurgeon prescribed a ten day course of valtrex immediately before surgery.  He was doing research and writing a study on herpes simplex /viral presence in the facial nerves and its relationship to viral illness after the tumor removal.  This was in 2005.  My PCP prescribed another course of the antiviral for the post op period.

I always keep a bottle of antiviral with me in case I feel a fever blister coming on at the tingle stage.  I am very aware of the possiblity of the virus attacking my facial nerves and creating a Bell's palsy effect.

I have investigated the possiblity of getting a shingles vaccine.  Medicare will not support the cost.  I will have to pay top dollar for it, because my PCP will not purchase the vaccine for his patients.  Secondary providers pay less than half the cost and unless the patient pays the other part the doctor cannot carry the responsibility.  I will pay the $ amount out of pocket at my local pharmacy clinic...more on what it costs me, later.

It is too bad that the people who need the vaccine the most, old and immune suppressed, will are not eligible for coverage for the shingles vaccine. 

[vcschaub]

The House clinic usually prescribes an anti viral prior to surgery. In my case, they did. Also, when my facial weakness set in two weeks post surgery, I was given another round. When a person gets Bell's Palsy, the virus is in the internal ear canal, which is why Bell's Palsy's symptoms are similar to post AN surgical weakness.

[pattibobatti]

Hi Holly,

Sorry to read about your shingles.  The way you describe the virus, comparing it to the pain of contractions..... it must be bad. 

I just hope that you can get some relief soon..  You have to sleep. 

I'll be thinking of you and I just hope you can get over this quick.

Patti

[Sheryl]

Boppie - That's awful about Medicare not covering the shot - guess they would rather pay for doctors' visits and hospitalizations (if necessary)!!!  We were lucky as our carrier (BC-BS of Mass) would cover it once we turned 60. Our doctor made us sign a statement that we would pay if insurance didn't because he didn't believe the info I gave him and the good reimbursement I was quoted.  I think our doctor said it would cost him $190/shot and that didn't cover administering it and materials needed (syringes, etc).
Sheryl

[linnilue]

Finallly got hold of my neurologist today.  My primary is still on maternity leave so my care isn't up to par to say the least.  He said that I have to take Lyrica, otherwise if I don't get on top of this pain fast then I may spend a very long time, months, years or forever with npost herpetic neuropathy.  He was very serious about it.  That was the first time any of these docs had taken this disease seriously.  In fact his tone of voice was quite earnest and I knew he meant business.  So for all of you out there, he said that any of the antiviral which are given, must be given with the first signs of the disease, with or without the rash and once the rash appears the antiviral must be given as soon as possible...not four days later, it won't work.  The lesions are disappearing rapidly but the pain is still close to 10.  Tomorrow morning I will get my Rx of Lyrica and I'll let you all know how well it works, although it may take a few days.  I hope I fall asleep for two days, I'm exhausted from the constant pain.  I think anybody reading this should get the vaccine, noone would want this, we already have enough to deal with.  Thank you all for all your well wishes and support.  Holly       

[Boppie]

Sheryl,

Ordering the vial, storing, administering the shot, and needles must be a reasonable cost for the doctor.  But his clerk tells me the shot costs him $280.00 (to buy).  

[Boppie]

Holly, The dosing directions are exactly the same for taking the antiviral for fever blisters.  One has to get the dosing started at first sign of (the tingle stage).

I read some of the research on herpes virus.  Wouldn't it be wonderful if a vaccine were developed to be given to children so the viruses such as herpes 1 & 2 could be irrdicated.  It seems the virus could have links to many disease processes, and not so simple as Bell's Palsy and Shingles.  It is not so far fetched to imagine.  Babies get a dose of antiviral in the eyes at birth to prevent blindness. 

[linnilue]

Get this...I picked up my prescription of Lyrica today and a 15 day supply was $336.00 even with my health insurance!! I couldn't believe it.  It better work but I may end up taking it for 6 months or longer.  I'll let you all know if it works.  Something better work 'cause I'm still "Sleepless in Vermont."  I need some zzzzzzzzzzzzzzzzzzzzzz's.  I told my doctor that I'm praying to the Gods of everything for some relief.  The pain makes me crazed and I'm sure my poor family is suffering along with me.  I will pray for all of you too that you never get this, whatever God is your God, you can be sure he's/she's on my "God Help Me" list.  Here's to a good's night sleep, Holly   

[linnilue]

O.K. people...listen up.  I was put on that new drug Lyrica about 3 weeks ago and the pain is now gone.  No kidding.  the drug has only been on the market for a little over a year and it is used specifically for neuropathic pain and the only drug approved for post herpetic pain(shingles).  It's a miracle drug.  It's not cheap but it's worth it.  It's also taken away all the pain I have from fibromyalgia.  I now sleep through the night, which I haven't done for 7 years.  I want everyone out there suffering like me to know how good this drug is.  Just don't come screaming when you see the price, it's worth it.  Thanks all of you for your support.  I knew this wasn't an AN issue but I knew where to go for help.  Have a nice weekend.  I don't know about the rest of you but we are breaking records here in Vermont, it was 77 today!  No kidding.  Holly

[sgerrard]

Holly, that's great news! If anyone deserves a good snooze, you certainly do! 

20 bucks a day ain't cheap, the anti-virals are in that range too. But as you say, if it works, it is worth it. Take out a second mortgage if you have to.

I am glad to see you have found some relief, I have been following this post now and then, with no help to offer, but wishing that something would come through for you, and now it has. Thank goodness.

Steve