Recurring shingles

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i have had shingles 3 times in 6 months and at least once a year for the past 5 years. It is usually at the base of my spine and whilst the spots are within a circle the size of a 5p the symptoms are debilitating ! I usually spend a week in bed. I visited a family last Monday , 10 days ago, and probably had the start of shingles as the next day I was extremely fatigued and spent 5 days in bed, then the rash appeared on my hand. I visited the family yesterday and the child was not present but  the family have now cancelled my next visit as the child has been sent home from school today with chicken pox. I feel awful.......did she catch it from me? Or was it in her system and I caught it from her? Is it a coincidence, or am I now looking forward to another bout of shingles. When I am well I am an active 50 year old......when I am ill I suffer chills, sweats,nausea,headache and loss of energy and spend most of my time in bed.....FED UP......especially with the myth that you only get shingles once....

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  • Posted

    I can't answer your questions as I am hopefully nearing the end of what was my first bout with shingles.  There are others with medical expertise on this link who may be able to give you the information you need.  I can only offer sympathy for what you are experiencing as I know the agony of the pain that comes with this condition.

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  • Posted

    Dear Julia,

    I am sorry for your suffering.

    First, I understand more than you know as I have recurrent Herpes Zoster-Shingles every three to five weeks for the past twenty years in my right ear and twice in my right eye.

    Do you take an antiviral at the first symptom you are getting Herpes Zoster-Shingles. Don't wait for the rash to appear. Famcyclovir or Valcyclovir are more efficacious than Acyclovir in treating Herpes Zoster-Shingles.

    Was the child exposed...touched or near the hand rash? Was not the child already immunized for chickenpox, as is standard protocol for children? The rash at the base of the spine is covered, and therefore not contagious. Is chickenpox going around in your area? It is highly contagious...Where do you live? The child should have been immunized with the varicella vaccine by now. If she was vaccinated twice, then she will have a milder case of chickenpox. Please don't feel guilty as you didn't purposely give it to her...it may be going around. She cannot give shingles to you as the virus already resides in your body.

    Please Google the High Lysine Low-Arginine Herpes Zoster-Shingles Diet. I believe that this diet helps prevent episodes of Herpes Zoster-Shingles. It will not stop them completely.

    I hope you have great analgesics for the pain.

    I am a Nurse Practitioner in the States.

    Please let me know how I can help you.

    Best Wishes

    Merry Juliana

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    • Posted

      thank you for responding. I live in the UK. I have had shingles for the past 8 years and initially took anti virals  but I am not convinced they improved things for me personally and have not taken them since nor do I take pain relief.

      The rash had not appeared on my hand when I had contact with the child so after lots of research I presume I did not give it to her. What puzzles me is did she have the chicken pox virus and trigger the virus in me? Or it could be a complete coincidence.

      I am always looking for a reason why I keep getting shingles and have yet to find one. I appreciate there are diets, medication etc to help alleviate the symptoms but I remain dismayed that there are no plausible reasons why I get recurring shingles and find it really frustrating. It's not something you can openly talk about....." oh...sorry....I can't do this or that today...I have been in bed for 5 days because I am so exhausted with shingles"......most people will respond with the usual..." oh...my grandad had that".....or  "oh...that's nasty....but you only get it once". Even the Drs don't seem to have any answers so I no longer see my gp when I have an episode. I was once told I had genital herpes and was so embarrassed I kept recurrent episodes to myself. I then realised that I needed it recorded on my records so went back to another gp to have it properly diagnosed and now if I have an out break I take a photo for my own record......any way....blah.....blah....blah.....sometimes I bore myself with it......it is what it is.......just a massive puzzle as to why it re- occurs and why nothing is being done to acknowledge this fact. 

       

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    • Posted

      My shingles are on my back and breast and I'm 3 months in, finally doing better. But what I've learned is that shingles/Herpes Zoster is not an airborne virus, chicken pox IS.Shingles is caused by a dormant chicken pox virus. You couild technically "give" someone chicken pox if they had contact with an open vessicle with their skin. They can NOT get shingles, only chicken pox and may someday develop shingles. Even people somewhat familar with it, don't always understand that.

      I'm not sure if anyone really knows why some people get recurrances, there are theories and ideas only. I understand your embarassment about "genital" herpes. Since i developed my shingles, my sister shared she gets them on the same spot on her lower back/buttocks too. Read other forums here and you'll find you're not alone. Personally, I don't know how your bum suddenly becomes genitals! Sounds a bit confused to me.

      Please consider taking the antivirals and possibly Gab or other pain medds. My sister actually takes the anti-virals daily, which I do NOT recommend, but a doctor suggested it years ago and it keeps them at bay. Again I don't suggest this, but it's an interesting idea. At the very least, taking the antivirals may help, why not try them again?

      Merry would be the best person to discuss this with here, but do you have some medical professional you're comfortable with? Even just sharing your story may help and who knows, they may have suggestions. My doc is "just" a family practice doctor but he seems to have more common sense and knowledge about shingles than many of them. Also a good pharmacist may have some suggestions too.  Take care of yourself.

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    • Posted

      Julia,

      Shingles is a debilitating disease to have once, but to have recurrent Herpes Zoster-Shingles is certainly terrible.

      A physician also told me it had to be Herpes Simplex with the ignorant myth that Zoster-Shingles doesn't recur. I asked him to do antibody titres of both, acute and chronic. Naturally, I tested high for Zoster-Shingles and negative for Simplex.

      I was forty-four when I had my first episode. At the time, I was relatively healthy. As time progressed, I have been diagnosed with SLE- Systemic Lupus Erythematosis, ITP- Idiopathic Thrombocytopenia Purpura, Psoriasis, and Sjogrens Syndrome. I also have Breast Cancer, but have an excellent prognosis.

      Regarding the diet, I am not one who follows fads or takes supplements, but Michelle on this forum posted regarding the High-Lysine Low-Arginine Herpes Zoster-Shingles diet. A light bulb went off as I recognized a correlation between my eating legumes for a heart healthy diet and my getting Zoster-Shingles. I ceased the nuts and legumes, both high in Arginine, and my episodes decreased markedly after about a month or two period. I didn't have any episodes for five months- a miracle for me...I just cheated and had nuts 10 days ago, and am now having an episode.

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    • Posted

      Thank you babs.......it is a puzzle, interestingly both my sisters have genital herpes.......the gp who suggested I also had this didn't even examine me, she didn't believe the previous GPs diagnosis and she was just adamant that you couldn't have shingles more than once so dismissed me, hence after a few years and more episodes I went back to another gp to have it diagnosed as shingles and put on my records. It wasn't my choice to see so many GPS but .unfortunately that's the way it is in our surgery....you can't get to see the same one.

      i understand that shingles isn't air bourne but as chicken pox is I wondered if that re activated my shingles.....on one occasion when I had shingles I found out that my niece whom I had had contact with had chicken pox, I just wondered if that was the trigger this time.

      i do sometimes wonder if it is a generation thing.....i.e. Is it genetic....a malfunction...or something my mother passed on or not!! She doesn't remember us having chicken pox as children and my sister was 18 when she caught it and very poorly and I was 28 and sadly also pregnant. 

      I may well change my mind about the anti virals but to be honest if the gps can't yet acknowledge you can have shingles more than once then I don't really trust their judgement on the medication available. To me it's a bit like HRT for hot flashes and night sweats......another post I know.....so sorry....but my point is.....we are all individual...I don't know how long my night sweats will last and I could take HRT to stop them....but they may stop of there own accord in a few months and if I was on HRT I would not know this.....so I choose not to be........likewise....when I get shingles I feel very sick and I could take anti virals....but by not doing so I can monitor the severity of each episode.....sounds crazy I know......but unless the medication is going to cure me or prevent further episodes I would rather not mask the symptoms...that way I can monitor it...no disrespect at all to those who take meds.....as I said we are all individuals and deal with things in different ways....I just want to know WHY!!!

      it is very helpful to share.....thank you to all those who are listening.....and to read all the other posts and answers.......very helpful

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    • Posted

      Hi merry,

      i respect your opinion...I have read many of your replies on these posts since I have been researching my ailment!!and they are really informative and helpful....thank you......I think I am a bit of a pain regarding supplements and diets....not to say I am stubborn!! Just strong willed!! I guess my problem with diets and dietary triggers is that if I have been eating nuts all my life...or lentils....or rice....or whatever the diet says I should not eat.....why have I not had shingles all my life!! 

      As soon as I have an episode......like most people!! I then start looking for the triggers.....what have I eaten.....what have I done.....who have I sat next to..........I think it's natural......but sadly I am not convinced that for me....changing my diet will prevent shingles.....although I agree it may well help to alleviate the symptoms......

      i guess my quest and thirst for knowledge.....will always be...WHY! But as with most things if we knew why we would have the cure to prevent it...who knows maybe we will find the missing link on this forum...by the way.....I have recently started to eat nuts!!.......my shingles came before that...x

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    • Posted

      Julia,

      Do you have severe pain with each episode? What I found is (with me) that the sooner I start the Famvir- Famciclovir, the shorter the episode and the less painful the episode. I also have been on all three antivirals, and Acyclovir was not efficacious, Valcyclovir helped some, and Famvir has been most efficacious. As I have had at least 12x20 =240 episodes, I have had time and opportunity to experiment with what works for me. There are years when I had it every 2-1/2 weeks.. ugh...

      I choose to post openly, as well, for the learning opportunities and free exchanges of ideas. The constitutional symptoms you suffer from with each episode, most physicians are totally unaware of. Of course, most physicians are abysmally ignorant of the diagnosis, treatment, and management of the disease in the States.

      I hope your family is supportive and understand of you when you have your episodes.

      Best Wishes

      Merry Juliana

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    • Posted

      Hi merry,

      i do get severe pain.....mostly the spots were dead centre in the base of my spine.....which according to the GPs was impossible as it should be on the left or right!!....hence I take photos for future evidence. this has caused back pain but I am quite tolerant......recently the spots have been on my fingers and palms of my hand.....this again causes pain and temporarily weakens the use of my hand.......you just learn to adapt.....the worse bit for me is the chronic fatigue........and lack of energy.....pain I can live with......lack of energy gets me.....the recurrence has increased and the last 4 months I have had an episode each month. I have spent a lot of time in my pj,s on the sofa......i have had to give up work and now work on a voluntary basis purely so that I can pick the days I work according to my health....I believe I am in menopause.......I won't know until I reach the full 12 months....so it is difficult to work out which part of the symptoms are due to this...i.e. Fatigue.....etc.....or even if a hormonal imbalance has triggered my symptoms......but reading on this forum lots of younger people have recurring shingles so I have sort of discounted this...forever searching....

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    • Posted

      Julia,

      As I say, I am not a health food nut...LOL, I eat a Mediterranean diet ....I was amazed about the legumes/nut avoidance working for me, btw....I never take supplements, except Vitamin D3.(my levels were very low....it was as if I lived in England...I just share the idea and hope that it might work for some individuals.

      You are obviously well-read, bright, and curious. Unfortunately, not much research is devoted to Herpes Zoster-Shingles.

      There is a new vaccine Shingrex by GlaxoSmithKline GSK for Herpes Zoster-Shingles that was submitted to the FDA in October 2016 and your corresponding UK agency in November 2016 for approval. It contains an adjuvant that renders it more efficacious (93-97%,) than Zostavax (37-53%.) GSK is testing subjects who have had Herpes Zoster-Shingles to see if it helps prevent recurrent Herpes Zoster-Shingles. I do not know how long the approval process for this and then distribution of the vaccination will take. Usually, the approval process (FDA) is 6 to 30 months.

      As Shingrex is manufactured from a killed virus, it will be safer than Zostavax, which is made from a live attenuated virus.

      One issue regarding the treatment of shingles patients with acute excruciating pain is physicians are not prescribing Opioids for the initial pain that many patients are suffering from. Opioids are the only class of medications that can lower the pain significantly. The others take awhile to work, need to be tapered up, and aren't that effective for agonizing acute pain.

      Best Wishes

      Merry Juliana

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    • Posted

      Julia,

      Regarding the pain, if there are no contraindications, I found for me that Topiramate, an anticonvulsant, has been especially great for a number of reasons.

      1. I started using it for migraine prophylaxis, and I haven't had a migraine for the 10-15 years. Everytime I have a headache, I know to start an antiviral STAT! Severe Migraines, stay in bed type, were a huge problem for me, but I couldn't distinguish whether the headache was Herpes Zoster-Shingles in my right ear or a migraine.

      2. I have had painful neuropathic feet, probably from autoimmune diseases for about twenty years. When I started taking Topiramate-Topamax, the painful burning feet disappeared.

      3. As an anticonvulsant, Topamax helps attenuate the severe neuropathic pain I do have during each episode and also helps prevent Post Herpetic Neuralgia.

      4. As a Nurse/Nurse Practitioner, I sustained back and neck injuries..all nurses get this....the Topamax also helped relieve the severe pain. As I am severely allergic (Anaphylaxis) to NSAIDS, this was wonderful.

      5. As I have Major Depression, I take Venlafaxine since 1995. When I started taking Topamax, the Depression, which was controlled about 90%, was lifted the extra 10%... it totally stabilized me...

      The point is that Topamax, which is a clean drug (with low adverse reactions for most people) can be helpful for neurogenic pain ie shingles pain and perhaps with my second point...I will private message you...

      Merry Juliana

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    • Posted

      I have noted all your recommendations and think that when I have another outbreak I will visit my GP and ask for the anti- virals. I have always been against these but as  lots of people claim that it lessons the pain and severity of future outbreaks perhaps I should give them ago. I get bad IBS hence my reluctance to take meds. However, now I have experienced shingles without them I have a good base line to see if they help. 

      I was also interested in your comments regarding Topamax, in particular as you said it helped with migraine. 

      And again, the new vaccine..........thank you

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    • Posted

      Julia,

      My pleasure...episodes vary, or course, with in the same person. This particular time is rather fierce, and I can't imagine not having the the antiviral on board. FYI

      Please keep us posted

      Merry Juliana

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    • Posted

      Oh......great........just been woken up by another outbreak on the base of my spine.....this latest spell is relentless.......this time armed with all my new learnt information I shall visit my GP.......if I can get an appointment!!!
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    • Posted

      Hi Merry,

      After a 7 day course of anti virals i have now been prescribed Aciclovir 400mg 2 x daily for 6 months and full blood tests......the clinical details are "recurrent herpes simplex"......not shingles!! Any thoughts?

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    • Posted

      Hi Julia,

      Did the physician actually scrape the vesicle-blisters and send the fluid to a lab for a PCR, not a Tzanck Smear? The only other way would be if (S)he performed a blood test on your antibodies, IgG and IgM, which is more difficult to ascertain time wise. You can also be positive to both Zoster and Simplex and not know for certain.

      I would try the Acyclovir suppressive therapy and see if it helps you, in any case. I would certainly ask your Physician how (s)he determined the diagnosis, ie by which lab test.

      FYI

      Herpes Zoster-Shingles vesicle-blisters erupt in waves or crops over a five day period and the vesicle-blisters are irregular in shape, not uniform in appearance. They are in a dermatome distribution.

      Herpes Simplex erupts at one time and the vesicle-blisters are uniform in appearance. They are contained usually in a circular pattern, but not always.

      I hope this helps

      Please let me know what you think...

      Best wishes to you.

      Merry Juliana

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    • Posted

      Thank you Merry......unfortunately I keep seeing different GPS one says herpes the other says  shingles.....hopefully the blood tests will help.....immunoglobulins inc EP, HBAIC, full blood count and bone profile, ferritin, folate, liver profile, thyroid and vit B12..........

      take care

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    • Posted

      Julia,

      Please look at the description I gave you in my last post.

      Simplex does appear all at once and the vesicle-blisters look the same.

      Zoster-Shingles does occur in waves or crops over a period of time, up to five days, and the vesicle-blisters are all different from one another.

      Ask for a DFA or PCR on the fluid from fresh vesicle-blisters as soon as you have another episode. That will give you a definitive answer.

      Merry Juliana

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    • Posted

      This triggered a question for you.  I began my bout with shingles about 3.5 months ago.  It was on my left arm and hand.  I'd had the shot a few years ago so I was told that my case would be mild.  It didn't seem mild to me as I was in acute pain, sleepless nights, etc. for a while but it gradually got better.  

      The worst spot was on my hand.  It eventually scanned over and healed.  However, that place remains extremely tender and the sensitivity extends up my thumb.  It's more of an aggravation now than anything else.  Every now and then I get the sharp, knifelike pains in that area but they don't last long--just a nuisance.  I sleep fine now and do anything I want to do.  I'm not taking Lyrica any longer either.  I just wondered if I should expect this to ever go away entirely or is it likely that it's with me for life?  I'm 72.5 years old.

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    • Posted

      Betty,

      While I can't say for certain, as everyone is different, usually the episodes of pain become more infrequent and less intense until you don't feel the pain anymore. That being said, for some of us, we get recurrent episodes of Herpes Zoster-Shingles with no relief. We just learn to live with it and control the pain, I am one that gets recurrent episodes every three to five weeks.

      Hopefully, the pain will slowly dissolve.

      Best wishes

      Merry Juliana

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    • Posted

      I'm starting my 5th month from back/chest shingles, almost no rash, but a lot of pain. I too wonder when it will be over, but I'd say you're doing a bit better than me, if that's any consolation. I'm still on a pretty high dose of Gabapentin, but am vastly improved from November and December.

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    • Posted

      Hi Merry, hope you are as well as can be? I have finally had a swob taken from my most recent outbreak to clear up if I have herpes complex or shingles.Thank you for all your advise, I rang the gp on the first day of the outbreak to ask for a swob, it was all new to him and he had never done it before. Unfortunately, due to a mix up it took 5 days for the swob to arrive at the gps......so it is day 6 and the spots have scabbed. He did take a sample....he's not sure when the results are back but will ring me......so lady of shingles wisdom......my questions are.....can you get a positive reading for shingles on day 6? He did tell me that on the next outbreak I have permission to get reception to order a swob and book me in the next day....

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    • Posted

      Hi Julia!

      The swab your physician sent on day 6 needed to contain DNA from the Varicella Zoster Virus. The lesion still needed fluid ie, not be completely dry in order for the test to work.

      The physician needed to order the PCR-extremely sensitive, or at least the DFA- less sensitive. If he ordered the Tzanck Smear, you are not gaining anything.

      If the test results are of no value, certainly return on day one or two for a retest.

      I hope this helps.

      Best Wishes

      Merry Juliana

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    • Posted

      Hi Merry,

      results are back HSV type 2........ not shingles after all!!! Luckily I am in a happily married, faithful relationship, it may have been passed on by my husband who has/ had coldsores......also being peri menopausal may have triggered the back to back symptoms for the past 7 months.....

      thank you so much for all your advise which prompted me to have a swab and confirm the diagnosis......at least I now know and can take anti viral drugs to surpress it.....

      once again....thank you...Happy Easter...xx

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    • Posted

      Julia,

      Thank you for letting me know. Still a difficult diagnosis, but hopefully the physician will give you a stock of antivirals to have on hand at the first sign of an episode and also prophylactic antiviral to take daily.

      FYI:

      Famciclovir and Valcyclovir are more efficacious than Acyclovir.

      Best Wishes

      Merry Juliana

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    • Posted

      Hello, Merry thank you for the information. I am a 42 year old woman suffering recurring shingles for about 7 years. I got my first attack at about 35 years old. I have had shingles 8 times since then and am very scared because I keep getting them. It used to be about 2 times a year but this year I have had it 3 times last time only 2 mths ago!!

      I take famciclivor and I have recently increased my vitamin D and C.

      Is this dangerous that I keep getting them, very stressed and i know that does not help!!

      I'm not wanting to get the vaccine so my doctor says all I can do is take the antivirals.

      Can you please tell me what you think?

      Thank you Nicole

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    • Posted

      Hi Nicole,

      Have you tried the high Lysine low Arginine diet? Please Google high Lysine low Arginine Herpes Zoster-Shingles Diet.

      I 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 started this Merry Go Round when I was 44 years old.

      Michelle on this forum informed us about this diet. Lysine prevents Herpes Zoster-Shingles and Arginine triggers it. It is important to remember that it is the ratio of the two amino acids that count. I eat a healthy Mediterranean diet, and was. being proactive regarding my heart health by consuming nuts and legumes. (Omega 3&6) Nuts and legumes are high in Arginine, and I was triggering severe and frequent episodes of Herpes Zoster-Shingles. Since I changed my diet, the severe agonizing pain and frequency of the Herpes Zoster-Shingles has been reduced markedly. It takes about half a year, but it works.

      I am immunocompromised, BTW.

      Please tell me what you think.

      I know how agonizing the Shingles episodes are, and the inability to function, to work, to care for your family, how draining, how exhausting, it all is. Frankly, only the people who have Shingles truly "get" it!

      Let me know what you think about trying the diet. I am not into any dad diets, BTW.

      I am sorry you are a frequent repeater. It is so difficult to be you!!!

      Yours truly,

      Merry Juliana

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    • Posted

      Thanks very much Merry!

      I am going to look into the diet. I have also read that Lysine supplements are good for preventing Shingles. Do you know anything about this?

      Thanks again and take care

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    • Posted

      Nicole,

      Some people prefer supplements over diet. Lysine supplements if taken in moderation are safe, but can cause problems if you have issues with your liver, kidney, and heart. I avoid supplements as too much of anything can be bad.

      I have just used the high Lysine low Arginine diet and been highly successful in avoiding the severe excruciatingly painful episodes. Here is my rationale and philosophical take:

      When I had a second ischemic stroke, my hematologist ran a huge blood panel to determine the cause of the stroke, including vitamin and minerals. I have eaten a Mediterranean diet, low fat, low salt for decades, but that is all. My vitamins came out super high, even though I was taking no supplements at the time. Your body uses food much better than pills or supplements, any day. Certain supplements can cause harm, as studies have shown repeatedly.

      I do take Vitamin D3 2000 IU daily as my Vit D level was terribly low at 16. I also take a Multivitamin with Lutein as I am at high risk for Macular Degeneration.

      Take a look at the high Lysine low Arginine diet and you will notice it is a healthy diet. It excludes beans, legumes, and certain other foods ie chocolate. ( I dislike chocolate, unlike most of the population. LOL)...(my identical twin and I never liked chocolate...she is allergic to it, in fact!)

      I know others on this forum believe in supplements, and "holistic practitioners" love to sell supplements at a high cost. Remember, what your body doesn't use, it excretes out. If you are on other medications, the supplements can interact with the medication, BTW.

      I would do what works for you.

      Please let us know on the forum how you do on the Lysine supplements and/ or high Lysine low Arginine diet and in general.

      I am so sorry you have been having this difficult disease so often! I truly know how you feel!

      Best Wishes

      Merry Juliana

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    • Posted

      Merry,

      Thank you so much for your time and information, I really appreciate it all!!

      I may try Lysine in moderation as you suggest and the diet. I also take vitamin D3 2000 iu daily as I am deficient as well. I am getting my blood next week and vit b12 checked too.

      I am just a bit confused as to what to eat and how much with the diet. Is there anyway you could give me an example of what you eat on a regular basis so i can give it a try.

      Thank you so much!!!

      Nicole

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    • Posted

      Nicole,

      I drink a 12 oz glass of orange juice and one 12 oz cup of caffeinated coffee with light cream. I love orange juice and my potassium runs low.

      I eat a large green salad with Romaine and red/green leaf lettuce, carrots, bell peppers, mushrooms, English cucumber, green olives, scallions, and cheddar or Muenster cheese. For dinner, I have perhaps a small portion of grilled Salmon, chicken, or beef, with either a potato, scalloped or baked, or pasta seasoned with persillade and Parmesan cheese. Also perhaps grilled carrots, barely cooked, or snap peas with mushrooms and onions or green beans. I also cook Swedish meat balls, Spaghetti with meat sauce, beef with barley soup, all served with a salad. I used to cook Coq au Vin, but as I can't eat it, I don't prepare it anymore.

      I don't eat processed foods as I am allergic to Sulfites and Nitrites and Nitrates. (Anaphylaxis)

      I cook from scratch. Some of the fruits and vegetables are higher in Arginine, but it is the ratio that is important. I am a huge milk drinker which is high in Lysine and also protects me against gout. I will snack on celery, carrots, and cucumber. I cannot drink wine or beer due to Sulfites. I am not one to drink hard liquor.

      I will make apple pies for Holidays from scratch...and eat vanilla ice cream occasionally. I am otherwise not a sweet eater. I do eat apples, pears, berries, but am allergic to some other fruit, as well....

      I hope this helps.

      Best Regards

      Merry Juliana

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