Glad I'm not alone

Posted , 4 users are following.

Hi All,

I am new to this forum. I had shingles when I was 26... that was 6 years ago. I recently had what I believe to be a reoccurrence. I thought it was a heat rash, but the way that it healed and left scarring I sort of know it's shingles. I didn't have much pain a little stabbing, a bit tired, and the rash didn't stay as long as my initial outbreak. Because my outbreak was six years ago I wasn't certain that it would come back. As I've had rashes like this before and thought they were heat rashes but now I'm believing they were reoccurrences all along. I take care of 89 year old grandmother who suffers from dementia, I travel between two states weekly to care for her, my time of the month is here and I'm guessing all of this stress could be the cause of this reoccurrence. I just had a CBC differential in April and it showed I was anemic and had some vitamin B12 deficiencies; could this also be a part of the cause? I was really freaked out because a few years ago my aunt got shingles twice in one summer and later found out she had myeloma cancer and it terrified me that this was my fate, she was 65 though and I have had shingles before unlike her and I had the chicken pox twice as a child. This logic and this board are the only things that have kept me sane thes past two days. I just wanted to connect and I guess looking for some reassurance.

1 like, 8 replies

8 Replies

  • Posted

    Merry Juliana has recurrences every few weeks and she will be the best one to advise you.  I do know that stress is a factor and I've read here that diet is too.  From everything I've seen here, shingles can take many different paths.  For some, they are "one and done" as far as episodes are concerned, but for many others, shingles is a recurrent condition.  I don't think you need to worry that your case will be indicative of anything else just because of your grandmother.

  • Posted

    Hi Nai,

    I am sorry you are going through this process with Herpes Zoster Shingles. You are correct that heat rashes don't scar, and don't have a stabbing quality, either. A heat rash can certainly itch, but resolve quickly with a cool bath and cortisone cream.

    As your CBC showed "some deficiencies with B12, " I would request a work up by a hematologist. The specialist can order more tests without insurance companies interference to focus on the etiology of the problem. Are you anemic? Do you eat from all food groups? Do you have any other medical conditions?

    You are too young for multiple myeloma, btw. My father had multiple myeloma.

    Does the rash appear in the same location as the initial shingles episode? Does it cross the midline? The fatigue often occurs with shingles, with malaise, aches and pains, headaches.

    Recurrent shingles can occur in healthy individuals, in those who are immunocompromised with autoimmune disorders, those taking corticosteroids or on immunosuppressive therapy.

    I am a Nurse Practitioner in the States and have had Herpes Zoster Shingles in my right ear every three to five weeks for the past twenty-one years and twice in my right eye. I am immunocompromised, but cope well with having Herpes Zoster Shingles.

    Please feel free to ask any questions.

    Your B12 deficiency must be evaluated by a reputable hematologist. There are many reasons for a low B12 level, and most physicians (family practice physicians and internists) these days do not understand all the fine points.

    Where do you live?

    The stress of caring for your grandmother can certainly bring on shingles in many individuals, but I would be curious to know how many "heat rashes" LOL you have had over how many years.

    Best Wishes

    Merry Juliana

    • Posted

      Thank you Merry for responding. I'm from the states as well. When my doctor did the blood test she did mention anemia and just kind of brushed it off like it's nothing. My gyn actually told me I was B12 deficient. 

      I have hypertension which I take medication for (definitely too young for it, but with my level of stress it's to be expected). I do eat from all food groups and I noticed that I was eating tons of nuts like pistachios, peanuts, and cashews. I've recently started to workout because I'm a bit overweight  and I train 2x a week on top of traveling. So there are a lot of factors I guess that could have re activated this virus. I know there has been times where I've thought to be way more stressful and nothing.

      As far as the heat rash I've gotten it every summer for the past couple of years. I actually thought I was getting a reaction to the sun as my mom suffers from lupus and can't go out in the sun, so I thought this is what was going on with me. I've also felt the shingles stabbing pains a few times but never really equated it to having another outbreak just thought I was having pain at my original site as they told me I would feel the pain for the rest of my life.

      What can I do to boost my immune system up to prevent another outbreak or lessen an outbreak?

  • Posted

    Oops!

    Nai, I also wanted to inform you that Herpes Zoster Shingles episodes tend to occur at that time of the month.

    Also, if you were to have the extensive work-up by the hematologist for the B-12 deficiency and it showed you have Pernicious Anemia, then yes, it would be related to Herpes Zoster Shingles as Pernicious Anemia is an autoimmune disorder. However, there are many reasons for a low B12 level, as I stated in my first post to you. Pernicious Anemia is very treatable, btw.

    Again,

    Best Wishes

    Merry Juliana

    • Posted

      Thank you for this Merry. I'm going to go to my doctor and get a referral for a hematologist. What else could cause a vitamin b deficiency? Could hormones be involved?

    • Posted

      Nai,

      First, as your mother has lupus, you are more prone to having an autoimmune disorder, not necessarily lupus.

      Where is the recurrent rash location and is it one-sided?

      Is your doctor a family practice physician or internist? She sounds incredibly lazy and ignorant. If your gynecologist was able to identify that you have a "macrocytic anemia," with a B12 deficiency, your primary care physician should have immediately started to investigate the cause.

      Do you eat meat, cheese, eggs, and/or yogurt? These foods contain high levels of B12.

      Are you taking a Proton Pump Inhibitors such as Nexium or Protonix?

      Do you have Irritable Bowel Syndrome?

      Certain medications can interfere with the absorption of dietary B12. Certain conditions such as gastritis and chronic diseases of the bowel can prevent absorption and also affect the metabolism of B12.

      Have you had General anesthesia lately, or in the past few years, specifically Nitrous oxide?

      You may not have noticed any symptoms of B12 deficiency, or you may have a sore smooth tongue, numbness and tingling, weakness in your hands, a tight feeling in your toes. The symptoms come on gradually.

      Please Google Herpes and follow high Lysine low Arginine diet. The nuts and legumes are high in arginine, which is a trigger for Herpes Zoster Shingles. I love cashews and finally realized it was a huge trigger for my episodes. Now they are less painful and every three to five weeks instead of every two weeks...

      Regarding your rash, does it appear at the original site of the shingles rash? Again, please describe the rash and location.

      BTW, recurrent Herpes Zoster Shingles episodes can be triggered by your menstrual cycle, exposure to UV rays, foods high in arginine, stress, and too little sleep.

      Regarding recurrent Herpes Zoster Shingles and Herpes simplex, the hormonal changes through the menstrual cycle signal the Herpes virus to replicate.

      What medications are you taking?

      As far as boosting your immune system, and trying to prevent Herpes Zoster Shingles, I would eat a healthy diet (high Lysine low Arginine diet.) Please note that it is the ratio of Lysine to Arginine that counts. If you love a specific food high in Arginine, weigh the risk/benefit ratio and try to moderate yourself. Chocolate is most people's favorite,(high in arginine.)

      Try to get plenty of sleep and rest. I know personally how difficult it is to care for family members as my twin and I cared for my father, then mother. Is there anyway to get respite care or share the care with anyone else? My twin and I were so exhausted we did not even think of possible options.

      It is important to try to have a healthy perspective on life. I developed high blood pressure and cardiac arrhythmias when I was 21 years old, and not until I transferred from the ICU to the PACU (Recovery Room) where I had much more control of situations, was my blood pressure stabilized on three medications.

      I also left my toxic husband and started my life over.

      I do take a multivitamin daily, even though I eat very healthy foods. I don't believe in megadosing of supplements as they can be toxic to kidneys, liver, heart, etc. It also wastes your money as it is excreted out.

      The hematologist should do a Vitamin D3 level, BTW. I know the hematologist will do a folic acid and ferritin (iron) levels and storage capacity in your body, as it is all interrelated.

      I hope I have helped you!, Please let me know about the medications, rashes, and other conditions. If you would rather share privately, click on the envelope in the upper right hand corner

      Best Wishes

      Merry Juliana

    • Posted

      My mom has lupus and told me to get tested and honestly I was and still am terrified. I know avoiding it isn't going to make it not be there, but some things are easier to face.

      After reading your message to me I looked and it actually is where my original breakout started 6 years ago. This occurrence did not spread like the initial one did though and I did have some heat rashes but they healed like regular heat rashes and the shingles left a mark.

      Years ago I had a doctor tell me that I had HSV2 as well, however I never had an outbreak or anything so I thought she had my test results wrong because I had only been with one person. Could this be the cause of the reoccurrence as well? 

      I take amlodopine for my blood pressure. I hate it and was trying to wean myself off of it. I'm going to ask my doctor to put me on something different.

      I also just found out I have HPV which I know is common among adults who've had sex. So my body is really depleted and fighting off all of these viruses. I'm super depressed as I write this stuff out to you as I don't know what I've done to deserve any of this. I know there are things far worse than this that can happen, but this is a lot.

      I don't eat a lot of meat, but I LOVE cheese. I stopped with yogurt and milk because I'm trying to kick dairy. No anesthesia lately, no proton pump inhibitors and Im not certain about IBS but at one time I thought I had it and my doctor said you may have it and literally flagged it off as nothing. I also have a problem with too much estrogen and not enough progesterone.

      I don't like doctors so I guess I've allowed my doctor to get along with the minimum. My husband is demanded that I change doctors and actually has asked me to look for additional help with my grandmother because he can see that I am drained. I barely sleep. Like I said I travel between NY and PA at least twice a week sometimes staying up for 36 hours to make the bus back home first thing in the morning. 

      I was also in the sun a lot too... how do I avoid getting an outbreak in the sun? I love to sunbathe and layout on the beach. Strangely enough I haven't been on a beach in three years before my life got crazy so being in the sun is definitely a factor.

      I think I answered everything. I'm scared and just hope that I'll be okay. I think having to answer these questions truly has opened my eyes and made me sad. 

      Thank you so much Merry Juliana. 

       

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