15 replies to this topic

[VickiW]

Hi everyone!

I am just sooooooooo thrilled  I have Shingles, again!  Had it a year before I was dxd (which is probably why I got it -immune system already compromised).  I am now just a month past 4 years since dxd and I have them again.  (I am now 59 so I had the first case when I was 54).  You would think this wouldn't happen since my immune system is fine now as I am in PCRU (or at least was at my last visit in late February).  Anyone else having this happen?  Or any thoughts as to a possible CML connection?

Now I must go find my cortizone cream before I go crazy!

Vicki

[GerryL]

HI Vicki,

Once you've had Chicken Pox you have the potential to get Shingles, the virus just lives in your body.

Gerry

[Susan61]

I just recently had a conversation with someone who does not have CML, and she was thinking of gettng the vaccination for Shingles.  She asked me if I would ever consider it.  I told her that I read something awhile back saying that Leukemia patients should never get that vaccine, but I did not remember the whole article or where I read it.

I feel sorry for anyone who has to go through it.  My father had them real bad many years ago.

Susan 61

[lkbanks]

Hello,just came across your post and I too have shingles.I don't have cml,but I have a blood disorder called ET(way too many palets).Never had them befor dx.This is the 3rd time and in the same place,on my face.They are above my lip close to my nose.Ugly,wish I could hide until they go away.Every time I get them I have been sick.all my counts are in normal range and my anc is also normal,but I can just get close to a sick person and get what they have.I just don't understand it.

     Just wanted you to know that you were not alone...LindaK

[Trey]

When I had them many years ago I took L-Lysine and it seemed to make them go away quickly.  Some people put apple cider vinegar on them:

http://www.earthclin...S/shingles.html

[VickiW]

morning Lindak!

thank you so much for your input!  On your face, really???  How horrible!  At least this time mine are on the front of my hip and trailing down my thigh.  Just makes it difficult to wear pants right now so I am grounded.  Interesting that you have a different blood disorder and get shingles repeatedly too. I do know that it is unusual, normally, to get shingles more than once.  Just wondering if there is some yet unknown correllation.

Thank you for visiting over here and sharing your experience.

Vicki

[VickiW]

Hi Susan!

yep, looking into that this morning.  Seems I remember hearing something about that too.  Thanks for jogging my memory.  I actually was thinking about getting the shot a few years ago but my insurance at the time didn't cover it and the thing was expensive so I didn't bother because it wasn't a 100% that you wouldn't get them again anyway, just that if you did, it would probably be milder.  Anyway, let you know what I discover.  Thanks again,

Vicki

[VickiW]

Thanks Trey.  I'll have to try the apple cider vinegar.  sounds better than constantly applying cortizone cream (dr. recommended).  Checking out your link next.

[VickiW]

anyone who has CML or other blood disorder that has had shingles more than once, I would appreciate hearing your experiences.  Just curious if there is a connection between us and repeated occurences.

[CallMeLucky]

Here's my theory about my situation that is completely not based in any scientific fact, but I believe is all related or one big old coincidence.  Two-three years back I had gotten ill, I had severe nerve pain on my skin, primarily on my torso.  It felt like I had a sun burn, but there was no visible rash.  The pain was enough to send me to the ER.  We all thought Shingles, but there was no rash.  The pain continued for months but it would move around and when it crossed from my right side to my left they were sure at that point it wasn't shingles because it doesn't cross the mid-line.  I had all kinds of neuro tests done and they found nothing.  I then went to an infectious disease doctor who did a lot of blood work and determined I had Epstein Barr virus (which is related to the shingles virus).  He determined that everything I was going through was related to the virus and would "burn out in 6 months".  He was right and the pain went away in 6 months.  I had gone for a physical a few months later and my WBC was close to 9K.  No one thought anything of this because it was in normal range.  A year later I go back for a physical and my WBC is close to 40K and the rest as they say is history.  I strongly believe the period where I had that pain was the onset of my CML.  I do not know if one caused the other, I just firmly believe that is when it all started.  Many people get these viruses and do not get CML so I don't think they cause it, but I believe in my case there is a relationship between the two.  This class of virus wreaks havoc on the body and my theory is that this somehow compromised my system and allowed CML to take root.  Perhaps I had other predispositions to the disease and maybe I would have gotten it anyway, but something happened during that time and the main culprit was that virus.

So in my opinion, there is a link between these.  In your case I would suspect it is just a relapse of the virus, once you have it, it stays with you and does not go away.  Various things can allow it to resurface, none of which have to do with CML.

Anyway, that is my crazy theory.  I hope you feel better soon.  I know the pain from it is very uncomfortable, I hope it passes soon.

[VickiW]

Hi Lucky!

your theory is closer than you think.  My first bout with shingles was a year or so (maybe 2) before I was dxd.  Because of the advanced condition I was in at the time of dx, it is accepted that I had had CML for  at least 3 years prior so I clearly had CML when I had the first attack.  I was having bouts of sharp pain on my left side at the time but this was contributed to the shingles as was my elevated counts and not looked into any further (my dr. at the time was verrrryyy pregnant and didn't even want to get near me because of the risk to her baby she then decided to leave her practice and I didn't seek out a new dr until I was forced to )  and no follow-up bloodwork was done until I went to the dr with SEVERE pain in my side and a huge lump (spleen of course) and was in ICU before I could blink and the rest, as you say, is history.  I had my first shingles very early (they don't even recommend the vaccine until you are 60) so that is what has me wondering about a connection.

[helenet]

Are folks with CML ok to get the shingle vaccination?

[jrsboo]

re: Vaccine:  Was advised by my oncologist NOT to get the shingles shot as it contains live virus. 

Caroline

[hannibellemo]

I agree with Caroline, I was told to avoid any vaccine that contains a live virus.

Pat

[ADCARSON]

Reading your post brought back memories....years ago....probably 20 years ago I was diagnosed with Epstien Barr...same symptoms as you...with the pain but no rash.  However I was just diagnosed with CML last year at the age of 55.  Interesting the possible correlation between the two.

[VickiW]

bump