Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Fran, Quite some time prior to my dx of CLL/SLL, I had a mild case of shingles, all on my scalp and face. I had lesions on my eyelid, nose, and, as I said, on the scalp/hair area. I self-diagnosed, and then saw a doctor, who started me on medication immediately. It cleared up soon, and except for sometimes having my "face hurt" when I either cleanse my face in the evening, or put on makeup, I have been fine. I think you did the right thing in seeking treatment immediately, as I did. Of course, that's a lay person's opinion, and not medically sound. However, I wish you well and a speedy recovery. Norma Oxley dx 12/05; tx 2/6 to 3/6 with 6 infusions of Rituxan. In remission since 3/06 In a message dated 1/24/2010 4:26:47 P.M. US Mountain Standard Time, franc513@... writes: I am new to this group; ten years-plus since dx and back to stage 0 after starting a regiment of green tea/curcumin/red wine/NSAIDS in 2002. We just returned from a lovely month-plus in Australia returning Jan. 5. This past Friday I felt some topical soreness in my ear and tongue. Saturday morning I went directly to an immediate care facility near my son's house where we were visiting. My worst fears were realized. A cortizone shot, valacyclovir and cephalexin were taken immediately. Now I need any advice from anyone who has been unlucky enough to have had facial shingles. I worry about lesions entering the eye and/or inner ear. And any other constructive advice of course is welcome. I am reading voraciously on the web. I will be searching this site tonight as well. I assume the best way is to do a search for "shingles."Thanks to all in advance.Fran Conn, dx 2000, no treatment except for occasional IVIGS, greentea, curcumin, NSAIDs and red wine. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2010 Report Share Posted January 25, 2010 My husband was dx in Aug, I was just wondering what stage you was in before the regiment? Thanks deb > > I am new to this group; ten years-plus since dx and back to stage 0 after starting a regiment of green tea/curcumin/red wine/NSAIDS in 2002. > We just returned from a lovely month-plus in Australia returning Jan. 5. This past Friday I felt some topical soreness in my ear and tongue. Saturday morning I went directly to an immediate care facility near my son's house where we were visiting. My worst fears were realized. A cortizone shot, valacyclovir and cephalexin were taken immediately. Now I need any advice from anyone who has been unlucky enough to have had facial shingles. I worry about lesions entering the eye and/or inner ear. And any other constructive advice of course is welcome. I am reading voraciously on the web. I will be searching this site tonight as well. I assume the best way is to do a search for " shingles. " > Thanks to all in advance. > Fran Conn, dx 2000, no treatment except for occasional IVIGS, green > tea, curcumin, NSAIDs and red wine. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Dx was March 2000. For 2 years my WBC went from 20k to 45k. I started on a regimen of green tea, etc. Over the next year my WBC went down to 5k. Of course there are other factors (WBC, RBC, Neuts) but they tend to follow a similar course. After our trip to AU it went up to 12K. Not sure why. My green tea is from China, but it may not be the same quality even though I purchased it from the same company. It is supposed to be 95% EGCG. Who knows? I read, I investigate, I pore over so much material. I just keep plugging along. And, thank goodness for these sites! Had it not been for all the reading, I would never have suspected shingles because of a little pain in my left ear and tongue. BTW, my condition remains the same as it was Sat. save for 2 minor small blemishes on my chin. So many mysteries! Fran > > > > I am new to this group; ten years-plus since dx and back to stage 0 after starting a regiment of green tea/curcumin/red wine/NSAIDS in 2002. > > We just returned from a lovely month-plus in Australia returning Jan. 5. This past Friday I felt some topical soreness in my ear and tongue. Saturday morning I went directly to an immediate care facility near my son's house where we were visiting. My worst fears were realized. A cortizone shot, valacyclovir and cephalexin were taken immediately. Now I need any advice from anyone who has been unlucky enough to have had facial shingles. I worry about lesions entering the eye and/or inner ear. And any other constructive advice of course is welcome. I am reading voraciously on the web. I will be searching this site tonight as well. I assume the best way is to do a search for " shingles. " > > Thanks to all in advance. > > Fran Conn, dx 2000, no treatment except for occasional IVIGS, green > > tea, curcumin, NSAIDs and red wine. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 Dear All, How much green tea? Caffeinated or not? Any peer-review studies? Ditto on all counts for curcumin, red wine and NSAIDS. Thanks very much, On 1/26/10 9:31 AM, " " <franc513@...> wrote: Dx was March 2000. For 2 years my WBC went from 20k to 45k. I started on a regimen of green tea, etc. Over the next year my WBC went down to 5k. Of course there are other factors (WBC, RBC, Neuts) but they tend to follow a similar course. After our trip to AU it went up to 12K. Not sure why. My green tea is from China, but it may not be the same quality even though I purchased it from the same company. It is supposed to be 95% EGCG. Who knows? I read, I investigate, I pore over so much material. I just keep plugging along. And, thank goodness for these sites! Had it not been for all the reading, I would never have suspected shingles because of a little pain in my left ear and tongue. BTW, my condition remains the same as it was Sat. save for 2 minor small blemishes on my chin. So many mysteries! Fran > > > > I am new to this group; ten years-plus since dx and back to stage 0 after starting a regiment of green tea/curcumin/red wine/NSAIDS in 2002. > > We just returned from a lovely month-plus in Australia returning Jan. 5. This past Friday I felt some topical soreness in my ear and tongue. Saturday morning I went directly to an immediate care facility near my son's house where we were visiting. My worst fears were realized. A cortizone shot, valacyclovir and cephalexin were taken immediately. Now I need any advice from anyone who has been unlucky enough to have had facial shingles. I worry about lesions entering the eye and/or inner ear. And any other constructive advice of course is welcome. I am reading voraciously on the web. I will be searching this site tonight as well. I assume the best way is to do a search for " shingles. " > > Thanks to all in advance. > > Fran Conn, dx 2000, no treatment except for occasional IVIGS, green > > tea, curcumin, NSAIDs and red wine. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 some new info on shingles on cll canada, some good thorough info there. also search under shingles in immune compromise, or aids, or organ translpant. NOT saying that's us, but there will be more written on the subject in the immnue compromised environment. much of what is 'out there' in the general arena does not deal with immune system faults. Dwyer has, as usual done an amazing job on his site and it should be on all of our 'lists' of lists. He also has an interesting article on fludarabine refractory, p53 and how some of the tx deal with our immune systems, with comments by Terry Hamblin. thanks beth fillman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 I buy my green tea in bulk and fill my own capsules. I get my blank capsules from wonderlabs.com Here is my complete regimen: Curcumin 500mg per day from curcumin-turmeric.com No Flush Niacin 1000mg per day from wonderlabs.com Fish Oil 1200mg per day from Costco Naproxen(NSAID) 440 mg per day from Costco Multi vitamin 500 mg per day from Costco Green tea 95% EGCG ??? No idea how much I am taking Actually, it is now over 10 years with CLL. It is difficult to determine my dosage of Green Tea. I get my tea from a Chinese company. It is 95% EGCG and fill my own capsules. There is some information on clltopics.org. got me started with it. I can't tell if I have the same green tea as my first batch. I purchased it from the same company, but it is much browner, less orange, in color. Any other questions, feel free to ask. > >>> > > > >>> > > I am new to this group; ten years-plus since dx and back to stage 0 > >>> after starting a regiment of green tea/curcumin/red wine/NSAIDS in 2002. > >>> > > We just returned from a lovely month-plus in Australia returning Jan. > >>> 5. This past Friday I felt some topical soreness in my ear and tongue. > >>> Saturday morning I went directly to an immediate care facility near my son's > >>> house where we were visiting. My worst fears were realized. A cortizone > >>> shot, valacyclovir and cephalexin were taken immediately. Now I need any > >>> advice from anyone who has been unlucky enough to have had facial shingles. > >>> I worry about lesions entering the eye and/or inner ear. And any other > >>> constructive advice of course is welcome. I am reading voraciously on the > >>> web. I will be searching this site tonight as well. I assume the best way is > >>> to do a search for " shingles. " > >>> > > Thanks to all in advance. > >>> > > Fran Conn, dx 2000, no treatment except for occasional IVIGS, green > >>> > > tea, curcumin, NSAIDs and red wine. > >>> > > > >> > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 I forgot to mention the red wine...lots. If they come up with a pill, it will be contraindicated for me. ;o) > >>> > > > >>> > > I am new to this group; ten years-plus since dx and back to stage 0 > >>> after starting a regiment of green tea/curcumin/red wine/NSAIDS in 2002. > >>> > > We just returned from a lovely month-plus in Australia returning Jan. > >>> 5. This past Friday I felt some topical soreness in my ear and tongue. > >>> Saturday morning I went directly to an immediate care facility near my son's > >>> house where we were visiting. My worst fears were realized. A cortizone > >>> shot, valacyclovir and cephalexin were taken immediately. Now I need any > >>> advice from anyone who has been unlucky enough to have had facial shingles. > >>> I worry about lesions entering the eye and/or inner ear. And any other > >>> constructive advice of course is welcome. I am reading voraciously on the > >>> web. I will be searching this site tonight as well. I assume the best way is > >>> to do a search for " shingles. " > >>> > > Thanks to all in advance. > >>> > > Fran Conn, dx 2000, no treatment except for occasional IVIGS, green > >>> > > tea, curcumin, NSAIDs and red wine. > >>> > > > >> > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2010 Report Share Posted January 26, 2010 found this interesting tid bit while doing a search of shingles in the immune comp patient. http://www.encognitive.com/node/5417 beth fillman Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.