This was posted on our original Meniere's Disease database and was ported into this one for easy referencing. Feel free to contribute your own experiences by posting in the discussion tab above!
(Most of the data on Vitamin C dosage is from Linus Pauling's book here and this scientific paper.)
FYI - this has to do with mitigating Meniere's Disease (and BPPV to an extent).
Recently I've had tests taken that indicated high viral loads in my system, particularly herpes even though I have been taking Lysine for several months. Plus I had a cold sore pop out a couple weeks ago which tells me the herpes is still active.
Before I go on Acyclovir, I've decided to be a temporary lab rat and see if the Vitamin C can help in suppressing herpes based on what I've read about it. I've also read several books and reports on how Vitamin C can help in many other areas (mostly not related to Meniere's) so it seems to be a worthwhile venture to see if it also helps with the herpes/MM flare up.
I'll keep track and see how things go and how long it might take if it works. Will give it about the same amount of time one would give anti-virals.
As a backgrounder, I have been taking the full JOH regimen for several months now and it has significantly made a difference for me to where I am about 80-90% improved. However, I felt like I was not getting over the hump and went and had tests done which indicated I still had a high load of viruses, esp. herpes in my system even though I have been taking the recommended L-Lysine dosage. This is why I am now embarking on a more intensive anti-viral approach, first with Vitamin C before I try Acyclovir.
On a side note, I thought it was very interesting that my tests still showed high viral loads even with the amount of Lysine and Vit C being taken on the JOH regimen and this indicates to me that for some (like myself), this may not be enough to fully suppress herpes and one may need to be more aggressive at attacking it, i.e. anti-virals. Esp. for those of us who have had this for years and years.
I will share the dosage amounts of Vit C I am taking later because as numerous reports and studies on Vit C indicate, dosages vary wildly person to person due to the variances in our bodies and what we need. Essentially though, you take enough to titration to determine what you need and then maintain it. For more on that, go do a Google search on "Vitamin C titration." I would prefer that you do your own research and determine your own dosages if you're going to try this and also check with your doctor first (although this may be unconventional to him/her).
I'll be posting updates to this message here as well as making a new post each time so that way it's easier on you to keep track and also get email notifications of updates.
Even though it is too early to make any conclusions, I will say that after about a week of taking Vit C to titration that I am starting to see a difference in how I feel. It's hard to explain but it is as if the "edge" has been taken off my Meniere's and I have more confidence in myself when I go out and about. The first few days symptoms did get a little worse, especially the ringing in the ears but it makes sense because a battle royale of sorts is going on in my system where the virus and Vit C are fighting it out.
We also have had some nasty weather with the usual barometric pressure changes and it did not affect me as much as it usually does which is a good sign.
I have actually logged more detail in my logbook, i.e. how I have felt overall on a scale of 1-10, level of ringing in ears, and attacks recorded (if any). I can share this as well upon popular demand.
Update - 2/10/10: For what it is worth, I have finally hit my bowel tolerance limit (I've been upping it slowly) today so I will taper back slightly and then stay on a maintenance dosage and see how things develop from here on out for a few more weeks.
Update 2-19-10 -- It's been an interesting week, needless to say...
Since the last update and hitting bowel tolerance, I had started feeling significantly better -- almost to the point where I was normal with no Meniere's. By the time the 15th rolled around, I felt like a 9 out of a 10 scale which is excellent with very little ringing in the ears. The anti-viral aspect of vitamin C is clearly working.
However, on February 14th it was a weird day... I felt good in the morning, better than usual, then I had an vertigo attack from getting up from my chair too fast while looking at something on the ground. This was a full blown vertigo attack, but what amazed me about it is it only lasted about 10-15 minutes when my attacks normally lasted hours (before JOH, avg. 8 hrs, after JOH 1-2 hrs). This time, 10-15 minutes! While I was disappointed in the attack, I was thrilled it cut off so quickly.
I also recovered much quicker than usual as well -- to the point where I went on a 5 mile hike with my Dad around Paynes Prairie in Gainesville, Fl later in the afternoon. Of course, I was a bit wobbly but did well. Normally it would take me around 1-2 weeks to recover from vertigo attacks.
A couple days later unfortunately (2/17), I got a nasty case of hayfever from all the pollen in the air. It seemed to hit a lot of people - my Dad, wife, neighbors, etc. It's clear I need more protection in the allergy department so I will be adding Quercetin to my JOH regimen to supplement the MSM. I was taking Quercetin for awhile before JOH and it worked well WHEN I remembered to take it.
I did get a sinus headache, lots of pressure in the head & ears, runny nose, etc. from it and as a result, it aggravated my Meniere's to make me a little off balance and dizzy. Unfortunately, Vitamin C can't do jack vs. allergies. I rated 2/17 5-6 on a scale of 10. The next day (2/18), I felt a little better, but still fighting hayfever and rated the day a 6-7/10 with me feeling a lot better towards the evening and pulling out of it.
On 2/19, it appears my hayfever is about winded down and I was on the mend so the day was rated a 7.5/10 with some minor off balance feelings. It's quite clear when the hayfever started going away my balance was getting better. I do notice that the hayfever is winding down quicker than average since it used to take me a week or two to completely get over it, so perhaps my immune system is stronger now from the vitamin c.
I and my wife do recall that this time of the year last year was when I started having attack after attack and it was the beginnings of my spiral back into Meniere's hell, so to speak.
As for the ringing in my ears, it is noticeably less than it was prior to the vitamin C test. Although it spiked high during my attack, it tapered off after a few hours.
OVERALL, other than the hayfever and short attack, it has been a promising week with definite improvement in how I feel. It is remarkable how the "edge" to my Meniere's virtually evaporated within days of starting the vitamin c mega-dose regimen and this continues. As things are, it's a very promising start.
On a side note since I have made references to the JOH regimen - I have been on it for several months and it has clearly made a difference, but the problem is I could not get over the hump so to speak. While I felt 80% better, I wanted to hit 100%. A few weeks ago tests revealed that I still had high viral loads in my system, especially herpes simplex, so it was quite clear even several months of 3,000 mg of Lysine a day wasn't enough so then I planned on attacking this with anti-virals and then using Lysine to keep it suppressed. I plan on sharing my JOH experiences later after this mini-trial on Vitamin C as well as detailng my personal trip into Meniere's hell starting a year ago.
Update -- 2/27/10:
From 2/19 on for a couple days thereafter, my hayfever was regressing so it also meant my symptoms were becoming alleviated. One interesting side affect of hayfever is significantly increased ringing in my ears. As noted in the previous update, in the past when I had nasty hayfever/allergies (esp. around this time of the year with the abundant pollen floating around) I would normally have several vertigo attacks and the usual junk that comes with Meniere's Disease. Not this time around, save for the minor stuff and a short lasting attack that had more to do with BPPV.
Throughout the week up to today I continued taking the amount of Vit C to just prior to titration. Later this week I may bump it up just to see if my titration level remains the same. The theory behind this according to several doctors and studies is your body is your best indicator of the amount of Vit C you need -- you basically take enough to the point just before your bowels become loose. I have not had loose bowels all week, save for excessive farting at times.
At the beginning of this week three time period, on a 1-10 scale of how I felt was at 7.5/10 due to the remnants of hayfever but by the time yesterday and today, it rose to a high of 9/10, the highest ever I have felt in many months.
Halfway through the week, the ringing started tapering off from loud levels to mid levels and by 2/26, the ringing was virtually unnoticeable and continues thus far.
There have been three days of bad/stormy weather and on those days I still felt like an 8 out of 10 when I normally feel quite worse. Today we've had a bad start to the day weather wise but I still put down 9/10 as of this evening which is highly unusual for bad weather days.
(For your reference, a 10/10 is a day in which I completely forget I have Meniere's Disease and have absolutely no symptoms whatsoever. In short, it would be similar to being in complete remission. That's my goal with my dual JOH and Vit C regimen.)
Overall, it has been quite an improved week for me with a lot of confidence in myself, etc. I have begun resuming a normal life and started to go out on long weekend trips (which usually cause problems). One very pleasant and gratifying factor of all this is the improvement of the quality of my life where I don't have as much fear, worry, anxiety, etc. pervading every corner. This is significant, at least to me, because this is what I consider one of the twin evils of Meniere's Disease -- the psychological part and it can often be worse than the physical because it really puts a beating on you. Anyway, it has been a pleasant surprise and I am hoping the upward trend maintains!
On an interesting side note, I have noticed that my positional vertigo issues (BPPV) are also diminishing as well so we shall see if this continues. I do recall reading from one of the Acylovir studies that in 61% of cases it also successfully alleviated folk's BPPV.
Yet one more side note -- I have noticed that there's some other positive side effects of mega Vit C regimen - I recovered from my hayfever much quicker than normal and it was not as harsh on me by far, plus with everyone also getting colds around me I have not succumbed yet to one, my plantar fasciitis is not bothering me as much, and overall I am feeling better and have more energy (altho this part could be attributed to the vit c suppressing the virus and in effect improving my disposition).
Upward and onwards, folks...
Update -- 4/5/10:
Folks, sorry for the lack of updates but that ought to tell you it's a good thing because if you see me here often, it's not good news! Wink
Anyway, I'm very pleased to report that the megadose therapy of vitamin C is indeed working very well for me. I have not had any attacks since last reported here and my symptoms have markedly diminished to the point where most of my days are rated 9.5 to 10 out of 10, i.e like I have no Meniere's or BPPV even.
I do still have some issues during heavy weather when the barometric pressure jumps off the charts, but even then I have been faring much better than before and I feel this part will continue to improve as my ears keep healing. Also very little ringing in the ears already -- mostly nonexistent at this point for me.
What is amazing is how it has pretty much held my BPPV at bay as well.
I have also been engaging in deep meditation techniques and I believe those have really helped as well as we all know how MM can be devastating to us mentally and take a long time to recover from moreso than the physical symptoms.
Additionally, when others in my household have gotten sick from allergies and colds, flu, etc. I have not. I used to get sick whenever the wind would change so this is very encouraging and further justifies taking vitamin C on a permanent basis.
I would be happy to answer any questions you may have. I can't tell you the dosage because it is a very unique amount depending on what your body needs (read above on how I determined my amount to take or ask me for clarification).
If you don't have access to standard anti-virals,this just may do the trick along with the many additional benefits that come with it.
I must say I have been incredibly pleased and surprised at how well this is working so far for me... I'm very happy. Smiley
Latest quick update as of April 24, 2010:
I am still doing very well and continuing to improve. While I am still cautious and careful about what I do, I have virtually resumed a normal life at this point. Also, even my BPPV has not been an issue of late.
I do still experience a little discomfort during extreme weather or barometric pressure changes, but I have noticed that has lessened as well.
Still not one attack or even a close episode, either.
Another side benefit -- I've forgotten to put lotion on or wear a hat on sunny days and usually get burned pretty bad. Not so since taking the megadoses of Vit-C. I still get a sunburn and look red, but it goes away a lot quicker and it doesn't burn as badly which is weird to experience. I did a quick search for this and found out a medical study showed that vitamin C helps reduce the effect of sunburns. Nice!
All said, I am now having 10 out of 10 days the vast majority of the time with occasional 9.5s because I am still healing having had this since the early 90's. JOH is correct when he says those of us who have had this for a very long time will generally take the longest to recover from it.
And before I forget, my friends and employees can even tell the difference with me -- they tell me they can see the fire back in my belly and the sparkles in my eyes. That meant a lot to hear because it truly means I am healing and coming back nicely.
Ironically, it seems my physical recovery has outpaced my mental recovery as I am still dealing with some lingering fears that come with having to deal with such a beast for so long.
I'll continue to check in
Latest update as posted in this thread on 6/16/11:
Quote from: acujen on 04/05/11, 08:57:16 am
Ray, are you at a "maintenance dose" at this point? Are all your MM symptoms gone?
Yup, I am taking an average of around 10g daily. I am leading a normal life once again, even taking long hikes in the wilderness and the like.
I'll keep posting weekly updates on this thread for your information.