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Discussion in 'Your Living Room' started by Fisherman42, Nov 14, 2020.
Please read all this thread carefully and you will understand
Well just wanted to add my experience. I'm almost 2 months in on AV's (Acyclovir) from Dr. Gacek (the son in Mobile). I am also on JOH and recently began taking Quercetin and Olive Leaf Extract. I don't know if one particular thing is responsible or if its the combo, but I can certainly say I am MUCH improved. It took about five-six weeks where I kept going through some rough patches but I would say I'm back at about 75% of normal sustained for the last 2 weeks. Compared to where I was, that is reason to rejoice! I've strung together some days where I almost felt totally back to normal. 2 months ago before, I was wondering if I could survive the 5 more days before my first appointment with him because the pressure, clogging, ringing and overall malaise was that bad. And I don't even have vertigo (knock on wood). I have some days where I will get fleeting feelings of lightheadedness and there was exactly one day where I felt like I came close to getting legitimately dizzy, but those feelings seem to be fading more and more. I hope I haven't jinxed myself, but I believe the antivirals seem to be working for me.
I think my case is similar to June's and feel strongly there is an allergy component to my issues and am awaiting my recent allergy test results. Hopefully allergy treatments can further help me to stabilize. A few months ago I seriously felt like my life was ruined and the only thing I looked forward to was bedtime (usually having to knock myself out with benadryl or reluctantly benzos on the really bad days).
I find that I still am sensitive to salt as I got a horrible case of clogged ear almost immediately after Thanksgiving dinner where I guess I consumed too much sodium. Hopefully I'll reach the point that others have where sodium doesn't affect them anymore.
Since antivirals are an inexpensive and relatively side-effect free drug, I don't see why anyone with Meniere's wouldn't try them.
That's very good news JohnL, we are all happy for you! We told you to be patient, didn't we!? Do remember though please, this is a marathon, not a sprint, there may be a some rough patches ahead.
About your Thanksgiving dinner, it could be the sodium, but if it was all home cooked, then I would doubt that. It could have been anything or nothing.
There have been times where I really didn't know if this stuff was working, but you're right you have to look at it in weeks-months, not day to day. I'm sure there will be more bad days ahead, but even when I have 'episodes' they seem less severe than before. Nothing like some of those days months ago where every moment felt like an eternity and I was severely depressed.
Not sure about anyone's religion here, but this challenge has brought me closer to God and I have been praying, returned to Church for the first and time years, reading the Bible, and thinking about ways to help others and give my life meaning. Almost like a cancer patient that survives and feels like they have a new lease on life. I sure hope the trend continues because this 'disease' absolutely SUCKS! lol
LOL - JohnL, you are a wimp! You never even got to the crawling on the floor, dragging your puke bowl trying to get to the toilet because you were about to experience a sever bout of diarrhea!!! And once you get there, you are there for hours because you can't move enough to reach the toilet paper! Man, you haven't lived!
But, like I said, we are happy for you and you are a good sport
If you want to try something else together with the VA: acetylsalicylic acid 300mg / day. Do an audiometry (on the computer or mobile, one from a doctor is not necessary) before starting and another every week.
Tell me about the results.
P.D: Make sure with your doctor that you can take acetylsalicylic acid since I think it cannot be taken if you have stomach or kidney problems.
Ivan, where did this idea come from? It's a new one for me. Aspirin is obviously an anti-inflammatory but so are a lot of other things. Anyway, did you read this somewhere?
I totally understand, and yes I hope I NEVER get to that point. The clogging/tinnitus crap is so disconcerting as it is I can't even fathom having to deal with all of those things on top of that. I salute those of you that had to deal with that!
An study in my language that I read that made a rare finding when testing a variety of treatments in 40 patients (corticosteroids, antivirals, hyperbaric chamber, etc). Nothing really worked to improve hearing except antivirals (famicyclovir in this case) which improved something in 40% and acetylsalicylic acid improved hearing in 95% on average 30-40db.
They don't even know how to explain it clearly because acetylsalicylic acid is ototoxic and causes hearing loss in doses of <10g, however for some reason with 300mg / day there was improvement here. They say that acid treats vascular problems, but it is rare because the other vascular treatments they tried did not work.
As always, the results were not conclusive, but not exclusive either, they ask for resources to carry out larger trials, etc. No money, no party.
I can't test it right now, but I think it may be worth trying AV + acetyl acid and see what happens.
Ivana is right. Aspirin and Nsaids (non-steroidal anti-inflammatory agents) - are commonly used, and apparently are only toxic to hearing .
Kyle and associates performed a systemic review of the effect of aspirin, and summarized 37 studies containing 185,155 participants. Aspirin intake grater than 1.95 g/day (i.e. about 6 "regular" aspirin tablets), was associated with worsened hearing. They reported that no data was available to "confirm that long-term doses of 81 mg or 325 mg daily have no hearing consequences". In other words, it is possible that daily "low dose" aspirin may also cause hearing deterioration, presumably to a lesser extent. (Kyle et al, 2014).
Another - Fiorinal contains aspirin, which is well known to be an ototoxin capable of causing a sensorineural hearing loss and tinnitus (Brien 1993).
Maybe the point is here - what doesn't kill you (hearing) makes you stronger (hearing)?
Great story! If it only could see this and others AVs success stories FDA, or private companies like Otonomy Inc. and Sound Pharmaceuticals which are testing the drugs for Meniere's disease approval..unfortunately, what was written in this forum, it remains in this forum..
We could say that this forum is better than nothing by spreading information about AVs help, but unfortunately lots of us don't even know that this forum even exists. Throughout all these years, this forum had only 2937 members and it's nothing compared to all Meniere's cases in the world!
Also, not everyone knows english, like I was 3 year ago and I am so happy that I started learning this language. Also big problem are doctors who say MD is idiopathic and so there is no help and you need to learn to live with that and unfortunately, the majority of patients have no other choice.
So my point in this post is - we need to be heard better!
Your deeper point is true, though the total number of people who have joined this forum would be, at minimum, roughly 2.4 times the number of current users, which is to say just over double.
Meniere's.org has updated its software multiple times. Because of this members who wished to remain on this forum were required, on at least one occasion if I remember correctly, to recreate their accounts.
Many members failed to do so.
For instance, the previous forum software states a total user number of 7,001.
An individual need not become a member to read the content of this forum, too, hence it is difficult to calculate the total number of people who have benefited from this forum.
Found this official AVs (Famciclovir) study for Meniere's disease which started in 2011
Famvir for Treatment of Hearing in Unilateral Meniere's Disease - Full Text View - ClinicalTrials.gov
Study status: Terminated
No Results Posted
When results are not available for a study, the results tab is labeled "No Results Posted." Results of a study may not be posted on ClinicalTrials.gov for any of the following reasons:
The study may not be subject to U.S. Federal requirements to submit results. See FDAAA 801 and the Final Rule: When Do I Need to Register and Submit Results?
The study has been completed, but the deadline for results submission has not passed.
The submission of results information has been delayed by the submission of a certification or a request to extend the results submission deadline. See FDAAA 801 and the Final Rule: When Do I Need to Register and Submit Results?
Found another official AVs (Acyclovir) study for Meniere's disease which started in 2012 with 80 participants
Unfortunately the status and the results of this study is unknown..
Efficacy of Antiviral Medications in Controlling Vertigo Attacks of Patients With Meniere's Disease - Full Text View - ClinicalTrials.gov
Interesting, why these two above-mentioned AVs studies for Menieres disease failed? According to John of Ohio, MD (in most cases) are caused by viral infections.
Although evidence suggests about 80% of Meniere's cases are caused by herpes virus infections of the inner ear, trying to treat that with any of the several antiherpetic drugs is still open to failure.
First, the antiherpetic drug must be administered in a sufficient, adequate dose. Next, it must be administered for a sufficient period of time. Doses that are too weak, or dosing periods that are too short, will fail.
Then, not every antiherpetic is equally strong against herpes viruses in the inner ear. Even some brands of putatively the same drug show reduced or absent therapeutic outcomes.
The question could be asked, what is the evidence that herpes viruses are not the root cause of symptoms in about 20% of Meniere's disease? I base this claim on the results reported to me by over 200 users of my treatment regimen, which features the amino acid lysine as the antiherpetic agent. In comparison, there is the Gacek report of antiherpetic drugs against Meniere's. In both cases, a bit over 80% got relief; about 20% failed. For those, something other than a herpes infection was causing the symptoms; lysine or antiherpetic drugs provided no relief.
--John of Ohio
John, where did you get these results? According to Gacek’s publication, AVs success rate is only about 38.7%
Results: Hearing was improved in twelve and not improved in nineteen patients. Complete control of vertigo was achieved in those patients with improved hearing.
Recovery of Hearing in Meniere's Disease after Antiviral Treatment - PubMed
I also compared Gasek’s study to one of those official above, which used the same Acyclovir.
In both studies the regimes were little bit different, so for the better comparison, I calculated the total amount of acyclovir used in 90 days:
In Gacek study - 122.4 grams
In official study above - 180 grams
So in that official study, they were using 47% more of acyclovir in 90 days than in Gacek study. Also they were using acyclovir 5 times a day for 90 days and despite this, the study failed.
OK, two official AVs studies for MD failed, Gesek study showed only 38.7% AVs efficacy, JOH regime "study" with lysine, according to John of Ohio, showed 88.2% "success" rate.
John, does that mean that lysine is more effective in suppressing viruses in MD than antiviral drugs or it's all about other 6 different parts of the JOH regime?
I had vertigo attacks nearly weekly starting early '16.
I started and have used your regimen along with a 'scrip antiviral since Aug. '17. I had my last vertigo attack in June '18. It did take me that long to overcome my vertigo episodes. I am still using your regimen and the antiviral now. It has been a success story for me.
I read a post by you that said it has been 10 yrs. since your last attack and you take Vitamin D now w/ a few other things and not the original supplements. If I may ask when did you stop the lysine etc? Is 2 and a half years too short a time with no symptoms (other than hearing loss) to switch over to the vitamin D plus others you take now?
I went to many doctors and all they could do was give me diuretics so I trust your findings more than theirs. Thank you for reading, April