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Having a down week and wanted to check in...

Discussion in 'Your Living Room' started by Gardengal, May 11, 2019.

  1. Gardengal

    Gardengal Member

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    I am an old member, haven’t been around much. I have done antivirals for almost 3 years and have felt pretty well. About 2-3x a year I have a bad week and I am in one right now. I attribute set backs to allergies overloading my AVs. Overall the AVs work and I am super happy. I always get a twinge of anxiety during these yearly bouts but they’ll go away within a week or so and I’ll be back to normal (Lord willing!).

    Let me add: a bad week now is brain fog, some fullness, a bit of pulsatile tinnitus and feeling “off.” I don’t really spin, if I do (rarely) it’s less than 10 mins. This has been my pattern for 3 years. I’d say AV isn’t perfect but I’ll take this set of issues over the absolute crap life I had for 10 yrs prior.

    I want to encourage anyone taking AV to stay the course, it took me a while to get big improvements. I ran my first half marathon this year! I run 4-5 days per week. My mm was so bad for so many years I just laid on the couch. I struggled what felt like very second. I made a promise to myself that I wanted to push myself physically and USE my body if I ever got a chance. As soon as I started feeling better I started running. It has been wonderful for my mind and body.
     
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  2. Irishstu

    Irishstu Member

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    Hi Gardengal, Im new to the group so trying to get up to speed. I also am having a week where i have pressure, tinnitus and Dizziness. I am not on anti virals currently but it seems from your post that when you are on them you don’t have these symptoms , is that correct? Maybe i should get on anti virals. What ones are you taking? Thx.
     
  3. Gardengal

    Gardengal Member

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    I do take them and have taken them for 3 years. I have small episodes a few times a year in spite of the AV. When I didn’t take them I was sick 24/7 for many years. I’ll take the small flares.
     
  4. Marta

    Marta Active Member

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    Nice to See you Garnengal
    Exercising is always good and makes a huge difference. Congratulations on running your first half marathon! Next year it might be 42.2km! Keep my fingers crossed for you. All the best!
     
  5. Rgv

    Rgv Member

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    Gardengal,
    What anti viral are you on? I'm on Valtrex now for 3 weeks
    Some slight improvement but not nearly a normal life yet.
    I get breaks of 20-40 hrs of no dizziness, brain fog but then it kicks back in and lasts for a day or so, then another break. Prior, I had dizziness, brain fog, tinnitus mostly all day. The tinnitus has improved slightly when I'm in the good period. How long did it take on antivirals before you noticed a big improvement. I'm still waiting and hoping. You should feel very lucky that you only get a setback 2-3x a year. I would take that in a second.
     
  6. Gardengal

    Gardengal Member

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    It took me a long time to get somewhat normal on AV. It’s gradual, like others have said. You slowly start having more good days than bad. Now, 3 years later, I get shocked an offended at a bad day. ;)
    I switched to Famvir (generic) after about 6-8 months on valcyclovir.

    Marta, good to “see” you! I hope for a full marathon! ;). Did you end up having any surgery or did you do AV? How are things going?
     
  7. Gardengal

    Gardengal Member

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    Also, I mostly just stay on the max dose. And I take Claritin every day.
     
  8. dwaynehoover

    dwaynehoover Member

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    I take reduced dose of antiviral mostly Northstar famciclovir (per Gardengal recommendation) but I take every dose with 1/3 teaspoon of black pepper which helps with absorption and also increases the half life (stays in your blood longer). I have had no issues whatsoever for 17 months already. Things that bothered my ears before no longer do. I also take 1/3 teaspoon turmeric extract along with the pepper and antiviral but I believe that it is the pepper that has done the trick, I haven't missed an antiviral dose with the black pepper in 17 months. Maybe just coincidence? Could be. Look up black pepper studies on internet in reference to drug effects and nutrient absorption. I lost a great deal of hearing over the prior 10 years (permanent) but no additional loss in previous year+. My tinnitus has stayed low coming from extremely bad before. I have lived much more normally now than I did for 10 years. I pray that this will last.
     
  9. Robert Wilson

    Robert Wilson Member

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    What doses are y'all taking on the A/Vs?

    I've been on JOH but haven't started the A/Vs. My doc just gave me my first prescription but I haven't cracked it open yet.
     
  10. Fisherman42

    Fisherman42 Active Member

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    I started with 3000 mg/day and the tapered down to 2000mg as I felt my symptoms subside. I think it was a few months before I began my taper you will know it when you’re ready. I was never able to drop below the 2000 because my symptoms would flare so I stayed right there. I wouldn’t wait I’m going on about 23 months now with only one bad spell that lasted about 2 weeks mainly because the pharmacy changed brands on me and the new brand didn’t work.
     
  11. Rebecca

    Rebecca Member

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    Hi. I have been taking Valcyclovir for a couple months now. Still suffering almost daily with fullness, brain fog, tennitis, a really weird feeling in my head, and really unsteady with balance. Sometimes I will have a day when things seem to be a little better. Then back to feeling like crud. What dose are you taking? Once, twice, three times per day?? Did you switch to generic for a particular reason? If so, do you think it is better than the Valcyclovir? Thank you for your input. I had my MM symptoms under control, kinda, for several years. Mostly low sodium & water pill. Then it hit again in Jan. and can't seem to get things back on track. I have really stepped up my diet again, this time also really watching my carbs. Started taking Betahistine, as well. But, not sure if I'm taking enough of that and enough of the anti viral??? I'm taking L-lysine, 2,000 to 3,000 Mg a day.
     
  12. Rebecca

    Rebecca Member

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    Hi Fisherman, are you taking the anti viral one, two, or three times a day? What brand did you find worked? Are you taking L-lysine too, and what about diet? Thanks for the input.
     
  13. Fisherman42

    Fisherman42 Active Member

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    Hi Rebecca nice to meet you! To answer your questions I’m on the maintenance dose so I take it twice a day once in the morning and once before bed. When first starting you want to take it 3 times a day spread out evenly through out the day. I have to maintain 2000mg for my maintenance dose some can drop to 1000mg it’s whatever makes you feel okay. I take Mylan, I used to take Aurobindo, but the pharmacy switched me a while back and the Mylan worked fine so I stayed with it. However when I was switched to Camber bad things happened. I do take Lysine twice a day along with monolaurin, lemon Bioflavonoids, magnesium, D3, B6, and some Allergy meds. It’s my own cocktail that seems to do the trick for my symptoms. I eat whatever I want I don’t go out of my way to avoid salt but when I can I get low sodium foods because there’s FAR too much sodium in the food we buy. I also only eat out once in a while and I prepare all meals at home using fresh ingredients and try to eat as many vegetables, fruits and whole grains as possible. A cheeseburger burger or pizza from my favorite place helps to feed the soul. Hope I covered everything if I missed something let me know. Peace ✌️
     
  14. Marta

    Marta Active Member

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    Gardengal, I had EBD 2 and a half years ago. No vertigo since that time touch wood. I got my life back. I started going to gym again. Life is good.
    I took acyclovir for some time before the surgery but it made no difference whatsoever. I was not able to get any other anti viral meds so will never know if it would have worked.
    I keep my fingers crossed for you !
    Take care!
     
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  15. Gardengal

    Gardengal Member

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    I take the max dose of Famvir, 3x per day in 8 hours gaps (even spacing). I did take lysine but I don’t anymore. I don’t watch my sodium anymore. I take the generic bc it is cheaper and I pay cash bc of my health insurance situation.
    DH- never heard of the black pepper deal, intriguing, I will look it up. Not to sound dumb, but how do you take that?
     
  16. dwaynehoover

    dwaynehoover Member

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    I have big container of organic ground pepper(does not have to be organic) I take my teaspoon and estimate quickly about 1/3 to 1/2 teaspoon, put it in a cup(do not put your face over or near the cup, stand back a bit or you will start sneezing trust me, then put in some turmeric or turmeric extract, put in 1/4 cup water and stir fir a bit, will not dissolve. Best to take with oils or fats supposedly, I take a spoin of black seed oul first but not necessary. The pepper is main thing. Try it. I put the antiviral in my mouth and drink the pepper and turmeric water quickly. Do with each dose of A v. If 3 doses per day then 1/3 teaspoon pepper is enough. No stomach ache from this. If you get well, cut down on avs soon, you are boosting your blood levels of av i believe at least temporarily. Just try it, i have been and no side effects and have had kidney liver function tests as well.
     
  17. dwaynehoover

    dwaynehoover Member

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    When stirring, keep the cup away from you, when go to drink, take a deep breath first, do not want to breath in black pepper or you will be sorry
     
  18. Dnrpn

    Dnrpn Member

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    Hello! What made you switch from valacyclovir to famvir?
     
  19. Rebecca

    Rebecca Member

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    Thank you Fisherman. I appreciate the reply. I spoke to my ENT a couple days after this. He said he is ok with me taking anti virals, and was willing to help me try it. But, he made it clear he wasn't in agreement with people taking them long term.
    Marta, may I ask what is EBD?
     

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