Please help, I need back up!

Posted , 8 users are following.

Ok everyone! I need you’re support.  I was at a new doctor yesterday who doesn’t believe that our neuralgia can appear in one spot, then blisters somewhere else on our bodies. 

Please chime in, respond, and back me up on this one! This way I can show her the evidence based proof that shingles is not always “textbook” shingles. 

I really appreciate any help I can get! Thanks in advance. 

1 like, 10 replies

10 Replies

  • Posted

    Unfortunately Tracy, our anecdotal comments are "evidence based proof", but it seems that she, like many doctors, don't know as much about shingles as many of us here. If you mean you can have pain in one area, such as your back left, but the rash appears on your front, that's definitely common, if it follows the nerve path. However, mine, in theory is supposed to be on the left front and left back, around the bra line, But many times the pain has been on the right side or the left shoulder. I had asked about this before also, as I didn't think it could. Someone mentioned they've had it also. It's happened too many times to me, including now with  my PHN.

  • Posted

    They have no idea the crazy things this virus can do!!! I have been told so many times, that you can't keep getting shingles, I'm too young, you can't get it on both sides.........REALLY?????? Because I am, and so do so many others!!! The dr's do not realize that virus' have a mind of their own and they mutate and change over time. What they discovered about shingles 20 years ago, is not what shingles is in all people today. There are still the textbook strains, but there are so many more! I feel the most sorry for those who do not get the rash at all, just all  the crazy, horrible other symptoms. At least the rash is proof that what we are feeling is not because we are crazy. I sometimes get the pain , fatigue, general flu like symptoms and escape the rash, but most of the time I will get a small blister to remind me I am not going crazy. Prof the what I have been feeling is a result of this ugly virus. There is so much that the medical community does not know about shingles and other herpes strains. It is really the cause of so many other illnesses that they are treating symptoms and not the cause. Einstein Bar virus is another that is causing havoc in people's bodies, that is not recognized. I would feel better if they would just say, "I don't know much about this virus" than telling us what we are feeling is wrong. Hang in there, and if you want to know what I've been doing that has greatly decreased  my symptoms and I truly believe will ekinate this virus over time, let me know. 

    • Posted

      Go get 'em Shoe Lady! I tempered my comments a bit, but I agree, just tell us you don't know and haven't dealt with it much! I'm lucky that my doctor is very familiar with it, but I still keep reading and talking to others, particularly pharmacists, to keep learning.  Remember when ulcers were caused by "stress" and drinking milk would? Now it's proven it's caused by H Pylori, a bacteria that needs to be treated with antibiotics.

      I still have fantasies (no, not about Ryan Reynolds or Chris Pine, well sort of, ANYWAY) about 60 Minutes doing a piece on shingles and PHN. Think of the good that could do.

    • Posted

      Oh, you are not kidding!!  I dream of doing a "truth about Shingles" documentary. I have so much research and info that I could share. The only problem is it is not proven by science, and many people will have a problem with that. However, the truth is, I have been following a specific protocol that is working!! I have not felt this good in three years. I started in January and I know it my bones that I am going to force the virus back into dormancy. Patience and persistence. Happy healing my friend!!!!?

    • Posted

      Hi Shoe Lady,

      I'm very interested in the protocol you have been following.

      Maybe you could message me about it?

      Many thanks.

      Ali.x

    • Posted

      Shoe Lady, I'd love to learn how your trying to conquer this virus. I've only just found this site and registered this mirning, but if you're able to share what you're doing with me if appreciate it. I have a sister in law who's only in her 30s who is having episode after episode, too. I'd love to share with her, too. Thanks!

    • Posted

      You can do a cleanse for 28 days of solely raw fruit and veggies. I only made it 10 days, then switched over to a diet that will take longer to completely eliminate the virus (one can only hope). So, the foods you have to have in your diet every day. Mangoes, pears, asparagus, wild blueberries, papayas, coconut, red apples, bananas, artichokes, avocado, red and green leafy lettuce, green beans, sweet potato, spinach. Eat a lot of these foods daily.

      The foods you CANNOT consume: corn, soy, canola oil, processed beet sugar, eggs, dairy, pork, farmed fish, gluten, msg, natural flavoring, artificial flavors, artificial sweetners, citric acid, 

      And avoid the amino acid L-carnitine and whey protein at all costs. 

      I know this sounds crazy, but I have been doing it for 2 months and I have not felt this good in 3 years. I have shingles symptoms every month. I have been free of these symptoms 2 weeks after I started this. You should do the cleanse for as long as you can, then just start adding some cooked food. It is hard and boring, but effective so far. 

      I got this from the book theYou can do a cleanse for 28 days of solely raw fruit and veggies. I only made it 10 days, then switched over to a diet that will take longer to completely eliminate the virus (one can only hope). So, the foods you have to have in your diet every day. Mangoes, pears, asparagus, wild blueberries, papayas, coconut, red apples, bananas, artichokes, avocado, red and green leafy lettuce, green beans, sweet potato, spinach. Eat a lot of these foods daily.

      The foods you CANNOT consume: corn, soy, canola oil, processed beet sugar, eggs, dairy, pork, farmed fish, gluten, msg, natural flavoring, artificial flavors, artificial sweetners, citric acid, 

      And avoid the amino acid L-carnitine and whey protein at all costs. 

      I know this sounds crazy, but I have been doing it for 8 months and I have not felt this good in 3 years, since my first episode of shingles. I still have symptoms, but they are less frequent and WAY less intense and debilitating. You should do the cleanse for as long as you can, then just start adding some cooked food. It is hard and boring, but effective so far. 

      I got this from the book the medical medium by Anthony William. Very interesting read. Good luck

       You can buy it on Amazon. God Bless!!

  • Posted

    Just when I was thinking I was almost off my first case of shingles, my awful back pain came back yesterday. This morning new spots higher up on my right rib cage appeared confirming to me it's back again already. All my previous rashes were wrapped around my right waist line and appeared about a month ago. Plus, there's a small new rash on my left waist side, which my doctor said would never happen. She said it's always only on one side. HMMMPF!

    • Posted

      Welcome to recurring shingles, that according to most md's, can't happen. Mine comes on both sides too. Predominately the right, but I've had a few times where it has not listened to the guidelines and hopped over to the left. Take care of yourself and keep looking for docs that know more.

  • Posted

    Tracy,

    I have had recurring Herpes Zoster in my right ear (Ramsey Hunt Syndrome) every three to five weeks for the past twenty-one years. Please inform your physician that the PCR was positive for the varicella virus in my ear canal, and my IgG and IgM antibody titers were high (positive) for Herpes Zoster (Shingles) and negative for Herpes Simplex. Most of the physicians wouldn't believe me either, until they saw those results. The otoneurologist did believe me, however.

    I hope this helps you.

    BTW, I am a Nurse Practitioner in the States.

    Best Wishes

    Merry Juliana

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