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I seem to be the only one who feels this way.....

Discussion in 'Your Living Room' started by California Sun, Sep 1, 2019.

  1. California Sun

    California Sun Active Member

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    Reading through all the posts, I see that so many of you are putting large quantities of unregulated supplements into your bodies. I can understand the desperation of trying anything for relief. I am feeling that way myself at this point. However, I seem to be the only one here who is really wary about putting large quantities of supplements that I don't know much, if anything about, into my body. I have looked for information about some of the things mentioned here but there is little to no information. My thoughts are these:

    1. Natural doesn't necessarily equate to safe, especially in large amounts.
    2. There is simply not enough information out there about these things, and they are neither regulated nor have they been tested.
    3. Anything that has the potential to have a good effect, also has the potential for harmful effects--including possible interactions with prescription drugs one might be taking.

    All of this said, I am extremely wary to try some of this stuff. Just because no one has reported untoward effects may not necessarily mean anything. Like I said, there just isn't enough known. I am not expecting anyone to agree with me--probably no one will, but I did want to post my take on all this. Thoughts?
     
    • Agree Agree x 2
  2. Brother_of_Nool

    Brother_of_Nool Member

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    Everything you say is true. Every success story that you read about on this fourm could have nothing to do with taking supplements; the disease could have just run it's course for individual and they lucked out (or not). But like you say, I'm desperate. Two years ago, I was dismissing people who took supplements for their various medical issues. Now I'm on board.
     
  3. California Sun

    California Sun Active Member

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    I don't dismiss the value of supplements nor am I putting anyone down who uses them. I do believe that they can have value in helping various issues. I am taking turmeric and glucosamine/chondroiten for my joint issues. These were recommended by my primary doctor, and they have helped and I have not had any ill effects as a result of taking them. But like I said my concern is putting something into my body that I know nothing about, especially that I take a couple of Rx drugs for other issues. One of these drugs is known to have interactions with a lot of different things, and I was warned about that when I started taking it--and told to be very careful about supplements, that some of them could possibly interact. So that is my big concern.
     
  4. Brother_of_Nool

    Brother_of_Nool Member

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    I understand, and I didn't think you were putting anybody down. You've made extremely valid points (points that I worry about) that need to be raised.
     
    • Fistbump/thanks Fistbump/thanks x 1
  5. June-

    June- Well-Known Member

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    I agree entirely. Not saying i would never try some of them, but i would do so one at a time with everything you said in mind and only if the regulated drugs didnt work.
     
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  6. wendy

    wendy Member

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    I think a slow start to any regimen is worthwhile. I just started on the monolaurin and am going low and slow. I have had no adverse reactions to the Lysine, bioflavonoids or the b5/b6. I will add in other supplements slowly so I can ascertain if there is a problem. I just had my annual physical and my numbers were improved from last year so I do not think the supplements are causing any problems.
     
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  7. California Sun

    California Sun Active Member

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    The few supplements I have tried, I tried one at a time and took it for a time before introducing anything else. At least that way I can have a better idea if something is either helping or causing a problem. I am steering clear of anything I can't find adequate information on or that seems questionable for any reason.
     
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  8. Rgv

    Rgv Member

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    Here's my take ,
    My life completely changed on Jan 4, 2019 with atypical Menieres diagnosed in early March.
    I have been on JOH regimen, b5, b6, and Valrex since April 24
    Since mid May, have gone from being dizzy 24/7 , loud tinnitus, head headaches, etc to pretty much symptom free with just lower tinnitus.
    TO say the above supplements/ antiviral helped would be huge understatement.
     
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  9. teesdale

    teesdale Member

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    I believe this is the way you have to approach supplements/meds. After 28 years with the disease, I was enjoying a record 17 months symptom free living on partial JOH, antivirals, diuretic. Then I started to become symptomatic so I added the B5/B6 and magnesium. Desperation even led me to add some off-the-shelf ear drops to combat the insanely loud tinnitus. Lately I am constantly dizzy, ear is ringing through the roof and even fullness is back. Haven't tested the hearing but I'm sure it's abysmal.

    Looking at changes in my routine, I did get a new batch of antivirals just prior to the start of symptoms but it was Northstar brand generic which has always worked in the past. I also fell off my diuretic due to changing medical coverage. I'm back on it but when I take the new diuretic, despite it being HCTZ 37.5/25 that I have always taken it is making me extremely dehydrated with tingling lips and even more dizzy.

    Now I feel lost within the supplement maze. I cannot bring myself to just drop everything, sort of clean house, because I'm afraid the consequence could be even worse than I feel now and that the upswing toward feeling better will be delayed.

    To mix a few metaphors, Oh what a tangled web we can weave when practicing medicine upon ourselves.

    But I don't see an alternative.
     
    • Agree Agree x 1
  10. June-

    June- Well-Known Member

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    I had outstanding success with antivirals only. Had i taken supplements with them, i wouldnt know what worked. I was also able to limit the time i took antivirals to months not years (knock on wood) but would certainly take them again if the symptoms returned.
     
  11. Bonlyn

    Bonlyn Active Member

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    We all have to do what we feel comfortable with to live our lives.
    This is how I view the situation after reading probably too much...and I understand we may all reach different conclusions and support whatever a person feels is best for them
    Unfortunately we seem to live in a world of greed and corruption. Due to that fact there are a lot of regulated drugs put out by pharmaceutical companies that may not be the best. I find it interesting that if we do not get certain brand names of drugs, like the antivirals, they may be duds. These pharmaceutical companies have great influence over medical schools and government to the point that research and proper regulation is not done on natural supplements. Since there is not as much of a monetary incentive.
    In two states naturopathic medicine is not even legal. Even though naturopathic doctors go through strict training.

    I am a big believer in functional medicine. After trying natural supplements a reputable homeopath or naturopath recommends, I will try it. But in the end I am still open to the pharmaceutical drugs if needed.

    Since this disorder we have does not seem to affect enough people to warrant huge studies for cure, we seem limited to a few mm friendly doctors ( that for many of us are in far away places) and what they recommend. We hope that when we bring the research from these doctors, our doctors will respond in a way that will help us. Even sometimes when we try these things they may not work.
    I am thankful John of Ohio, who has a chemist back ground, did the research and study on why and how he came up with his regiment. Most ents do not even seem aware of it and without this forum I wouldn't either...but it seems to have helped many.

    But I agree when trying anything, take the losest dose possible and work your way up. Get bloodwork on a regular basis to regulate organs if on a high dose of anything. Try one thing at a time to figure out what works. Unfortunately, I too would love an immediate gratification cure , but that does not seem to be the way with mm.
    Also be very careful where you get your natural and regulated supplements from...meaning the company. Some supplements may be the right thing but they were sourced in a place containing a lot of dangerous metals. This does not just apply to vitamins. A couple of years ago a generic, prescribed, thyroid medicine that was being manufactured from China and sold here was making people sick because of some fillers getting into the med. As I have been on this drug it really takes one's peace away. Who knows did that set off my mm.

    Wishing we all have the best knowledge and discernment to find the right dose of supplements or meds we need to put this horrible disorder in life long remission.
     
  12. Rebecca

    Rebecca Member

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    This isn't about vitamins, but I found this when researching Meniere's again today. Thought I would share. This gal is a nutritionist who has Meniere's.
    Laura Fisher Nutrition
     
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  13. Jimii

    Jimii Member

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    Cal Sun,
    I feel the same way you do. I don't even like the things Doctors prescribe.
    I did try the B5/B6 thing for several months. I noticed no change.
    After my last attack Sunday, I am going to try Vertigoheel for several months.
    I am not expecting it to help. My Vertigo attacks are widely spaced. It will be hard to tell if anything works.

    Rebecca,
    Thanks for that reading material.

    Jim
     
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  14. California Sun

    California Sun Active Member

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    I tried the B5/B6 too. It hasn't made a difference. I started the magnesium a few weeks ago. I haven't noticed any difference, and don't expect to. I tried lemon bioflavonoid numerous times over the years--did not make a difference. Back when I was dx'd 45 years ago, lemon bioflavonoid was prescribed by the the House Clinic. I considered trying the lysine but the part about "possible kidney damage" put me off. And yes, I do know that lysine is something we eat in food and something that our bodies need--but even good things can become toxic if too much is ingested. "More" isn't necessarily "better".

    I have no issue with taking supplements per se. My issue is putting something into my body that I know nothing about, especially given that I already take a couple of Rx meds for other things.

    In the end, we all make our choices of what we are willing--or not willing--to do or risk.
     
  15. California Sun

    California Sun Active Member

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    Thanks for posting this. I found the article very interesting and I agree with most of it, especially the part about food being enjoyable and not stressful. Most of what she recommends are things I am already doing and have always done. What I will not do is eliminate dairy from my diet, nor will I give up the small amount of gluten-containing foods that I do eat. Those fake dairy substitutes are nasty, and I will not eat them--and if you read the labels, you will see that most contain SUGAR. I eliminated junk food and refined sugar from my diet a number of years ago. I follow a low-carb diet and that's as restrictive as I am willing to go. More restrictive, and it becomes a quality-of-life issue. I also don't go along with the idea pink Himalayan salt is any better than any other salt. I have read elsewhere--and I believe--that salt is salt, regardless of its source, the only difference being that some forms of salt contain a few minerals--but in the end, all are salt.

    Everyone has an opinion, yet no one has any real answers.
     
  16. Mac

    Mac Active Member

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    CalSun,

    I think it is all situational. Menieres affects all of us at different levels. The more sick you are...the more desperate you are.. the more likely you are to try anything.

    I know this because I have...literally tried everything you can think of you get rid of my symptoms. Everything.

    Three years ago when when I was bedridden with a 2 year old and wife who was 8 months pregnant...if you told me shooting up heroin or smoking crack would get rid of Menieres I would have done it in 2 seconds. I am not kidding.

    So needless to say JOH's BioFlavanoids/vitamin C combo is not keeping me up at night.

    Its s tougher grind for some than others. Consult with a doctor and hope for the best!! Maybe you will get lucky and get a few good years!
     
  17. California Sun

    California Sun Active Member

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    I have had a few bad years but also many good years with minimal problems. Over the years I've tried just about everything during the bad times, to no avail, but it's always managed to go into remission for long periods of time. It's just been the last couple of years that have been bad. I have zero faith in doctors. If there was anything they could do to actually help us, none of us would be here. I hold out hope that something now in trials will pan out and become available in the near future. What's particularly disheartening is that I will start to feel better, have even had some days where I feel almost normal or near normal, but it never lasts, and the symptoms come back with a vengeance.
     
  18. Nicksteeleblack

    Nicksteeleblack New Member

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    So the JOH's BioFlavanoids/vitamin C combo worked for you?
     
  19. Mac

    Mac Active Member

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    No. lol. I was way too deep for JOH to work.

    Anti-virals helped but I started too late. I already had profound hearing loss and severe nerve damage.

    like you I was diagnosed in my late 20's. I did not start AV's until I was 38. They helped but the damage was done.

    I have a theory that younger you are...the more likely it is viral...so if I were you I'd go all in antivirals.

    3 per day for years in if neccesary. Get blood tests to make sure your cool...I'm no doctor but magic johnson looks pretty good 25 years on the heaviest anti viral load on the market.

    reach out privately if you need more info...hope you find some relief.
     
  20. Nicksteeleblack

    Nicksteeleblack New Member

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    Right on brother I appreciate it. I’m 6 weeks in on Valtrex “Northstar” generic. Just got another 3 week supply. No relief yet, feeling worse to be honest.
    Magic Johnson has MM? Or does he take it for HIV? Lol
     

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