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L-Lysine: How does it work?
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jordan2008 posted:
Dr. Moser,

How are you?

I wrote to you several months ago regarding my husband, who was diagnosed with Meniere's here in Jordan. It has been a long, hard road since, but he has generally been doing much better than in the past.

Based on the idea that Meniere's might be caused by a herpes virus that takes over the inner ear, which is an idea that is not widely accepted in the U.S. but has been studied in Japan and Europe, we learned that many Meniere's patients around the world have some success taking antivirals such as famvir and acyclovir, which are supposed to suppress the virus. Others take L-Lysine, which is supposed to behave in the same manner. My understanding is that people also take L-Lysine for cold sores and other types of herpes.

In any case, my husband decided to try taking L-Lysine and has been taking 3000 mg per day on an empty stomach in three separate does of 1000 mg each for about a week now.

At first, he felt really good but then got hit with a major attack of Meniere's, the likes of which he has not experienced for several months.

I asked different people about this (people with Meniere's who have tried L-Lysine) and they said that it is very common for someone taking this supplement to feel worse before the virus is suppressed. They said that the fact that my husband feels worse is actually a good sign and evidence that the L-Lysine is doing its job - and that he will likely feel better within 2-4 months. I have heard similar things about anti-virals and was told that the two work similarly...that there is often a period of increased symptoms before they fade away and the patient feels relief.

I would like to believe this is true as it might mean that my husband is on the path to recovery. At the same time, I want to be sure that he is not inadvertently harming himself. Is this the way L-Lysine works? If so, what is it that makes a person feel worse before feeling better?

As always, I really appreciate your insights.
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Rod_Moser_PA_PhD responded:
I gave up using Lysine for herpes-related diseases over two decades ago. Studies have not proven this amino acid to be effective. I have never used it in the management of Menieres, and of course, Menieres is still considered to be idiopathic -- no known cause. So, you are using a substances that has not been proven to help herpes for a condition that has not be proven to be caused by herpes.

I don't believe it is true that antivirals make things worse, before they make things better, Anecdotal comments are not the same as proven, scientific studies.

I can't imagine that lysine would be harming your husband in any way, but I would be surprised if it cured his Menieres (assuming this is what he has). It is certainly okay to try it and stay open minded, but if he he feels better does not prove it is the lysine that is doing it. As you may know, Menieres tends to resolve spontaneously, so do not falsely attribute any improvement to the last thing you have tried.

I would like to see your husband on the path to recovery as well, but I am not sure that lysine will be the magic solution.
 
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Yanksgirl responded:
I'm inclined to believe what Dr. Moser said too. I wrote to him about using some 'herbal meds' for the treatment of Meniere's symptoms. He was skeptical but said if they don't hurt you, and you want to try, let your doctor know and try them. So far, I've only tried the Lysine. I only have done as much as 1500 per day. I was afraid to try more. Actually, because my hearing improved, I thought perhaps I was on the right track. Then this weekend, my hearing has gone again, and very loud roaring attacks and head pressure are back. So, I'm with him for now anyway. I think this Meniere's or other inner ear conditions are episodic and so far meds only treat the symptoms and helps some and others they don't help. It's patient by patient and trial and error. I agree that real prescription viral meds have never made me worse, before making me better. That just wouldn't make sense I don't think. Anyway, I do hope your husband gets better. I'm dealing with some of the same symptoms and it's so frustrating!
 
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AussieMarvin responded:
I am not surprise by the Doctors response above, I have seen over 50 Doctors, Professors and Specialists in 5 countires, including Singapore, HK, Thailand, Australia and they all say the same. Take Serc, Dramamine and Stugeron. They treat the symptom and not the cause.

I luckily found a BIO CHEMIST who studied in the USA and have discontinued all medications doctors prescribed, and he told me to take L Lysine 1,200 approx 2 tablets per day, with Viamin C and Lemon Bioflavinoid. I have had NO attacks since.

The first 2 days I was told to take Lysine 1,200 per hour for 6 hours then second days 4 hours then 2 x tabs a day with Vit C and lemon Bio etc.

Doctors are not trained to help you treat the cause, (just the symptom) and it is linked to a herpes simplex virus. Non of the prescribed medication by the doctors help reduce my attacks at all over the past 5 years.

Thank God I found this guy, as no doctor had the training to help.
 
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KateyF replied to AussieMarvin's response:
Wow Aussie Marvin, that is great! I decided to begin taking Lysine yesterday. I am not sure what Dr. Moser is talking about in stating "Menieres tends to resolve spontaneously". I have lived with this horrible demon for 28 years! All these doctors seem to want to do for me is prescribe Valium n diuretics, or do surgeries that will NOT take the horrible roaring away n tell me to "live with it". YOU LIVE WITH IT!!!! I think they r all clueless n have no idea what it is like to live with this disease and try n lead a normal life - n until they can find its true cause, we r all left to be our own advocates n try whatever we think may help us - Katey

Katey
 
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Rod Moser, PA, PhD replied to KateyF's response:
I guess I should have said "The symptoms of Menieres comes and goes, so don't falsely attribute short-term improvement to any particular treatment." There is NO CURE for Menieres, and that include lysine.

I follow a scientific pathway, so unless a particular treatment has been proven by a scientific, controlled studies, I cannot prematurely jump on a bandwagon and preach that it is a "cure". People who religiously adhere to non-traditional treatments, like homeopathy, chiropractic, herbal, etc., do so out of faith, since very few have been proven to be efficacious (or even safe).

I don't have Menieres, but I do have tinnnitus -- another human affliction with few treatment options. The Internet and health food stores are filled with "cures", but all are really worthless.

Feel free to take your lysine. If you achieve improvement, that would be wonderful. However, your experience (pro or con) does not constitute a scientific study.

All allopathic medical providers ARE trained to treat the cause, but in Menieres the cause is not known. Period.
 
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kitty5001 replied to KateyF's response:
Katey, I have been doing research over the last 3 years from this affliction I have as well. I also have ran into more than once research that suggests the HV virus as a cause and more than once the suggestion to try the L-lysine, lemon bioflav and vit c ... I am considering this myself...please let me know if this has worked for you since you are trying it..very curious to know about this!! Thanks
 
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Dugmountainboy replied to Rod Moser, PA, PhD's response:
About 4 years ago I had a series of severe Menieres attacks over the period of about one year (in my left ear). Each time starting with a feeling of fulness in the ear, then highly distorted hearing and finally vertigo which could worsen over several days ending with violent vomiting that would leave me wiped out for atleast a day afterward. When the vertigo would come on i was at serious risk because i do construction. ( I then had a hernia which required surgery i believe as a result of the tremendous pressure exerted during the vomiting.) I went to a University Hospital ENT dept and they did a battery of tests and confirmed i had Menieres--which of course meant i had a set of symptoms with an unknown cause. They suggested a very low salt diet diuretics and Meclazine, and if that didn't work then various surguries etc. I did alot of online research and found something called "John of Ohio's" Menieres regimen which is a handful of natural naturally derived substances. It's based on scientific results largely accepted in Japan and Europe though not in the US where treatments have to include drugs or surgery to be accepted (and justify research and investment money).

I ordered the regimen (Lysine, lemon bioflavanoids, Beta 1,3 Glucans, MSM, vinpocetine and some other things) and have not had another attack since. The symptoms of ear fulness that was the first sign of an attack have returned a couple times and both times was when i let my supply of the above supplements run out and didn't reorder and replenish for 2 or 3 weeks. Now here is something interesting for you Rod Moser PA PHD: I had had tinnitus for years--starting mildly sometime in the late 1980's and it got progressively worse until around the time my Menieres attacks occurred loud whistling was pretty constant and normal to me: After beginning the above regimen my tinnitus started diminishing and is virtually gone--and i mean gone. (I know people can become accustomed to it--i don't mean that--i mean that when i focus on hearing it, it is either so slight that i can hardly tell it is there or i hear nothing.)

I believe Menieres can be caused by more than one thing so this may not work for everyone--but if you research it, it has helped many many people. I had shingles as a child and also had a shingles recurrance about 10 years ago--probably one reason it works for me...

Don't buy into giving up and just taking drugs or surgery, keep looking for an answer that works for you without destroying your ear or your body.
 
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Rod Moser, PA, PhD replied to Dugmountainboy's response:
Since everyone on this planet is different....and every illness or condition is different (even though the symptoms may be the same or similar), it becomes very, very challenging when faced with anecdotal comments. What worked for you, may not work for someone else, like you mentioned. In the scientific rhelm, improvement or cure does not necessarily mean that the last thing you did, or took orchestrated that cure. People can develop spontaneous remissions (with or without interventions).

If your alternative approach is not harmful...then do it. If you are selecting an alternative approach that does not have any proven medical value (based on good studies), and you get better....great. If you recommend an alternative approach to treatment based on what you experienced yourself, what you heard from someone else, or what you read on the Internet, and abandon traditional treatments, then you walk on very thin ice. An example would be for someone to give up cancer drugs in order to take a vitamin regime.

Menieres is idiopathic. No one really knows exactly what causes it and treatments are not curative. I wish there were "cures". Tinnitus can be caused by HUNDREDS of condtions, and finding the one (or more) causes is challenging to say the least. Like Menieres, tinnitus is very challenging to manage.

If you find something that seems to work for YOU....then, by all means, do it, but I caution you to try and duplicate your favorable response in others.

Your comments are greatly appreciated. Thank you for taking the time to respond.
 
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Dugmountainboy replied to Rod Moser, PA, PhD's response:
To Rod Moser,

I will say a few things in response and then respectfully cease and desist.

YOU have to say what you said or you would be disallowed as the expert on the site, even if it means rejecting any evidence to the contrary.

IN rejecting my input you--without saying it outright--rejected any evidence or studies or accepted treatments in Japan and Europe that support the efficacy of Lysine and the other supplements. USA only... don't stray outside the lines in order to protect your reputation.

A little research shows that many people have been helped by this regimen in the same way I have. But you have to go to other Menieres sites to read the response rates.

Science starts with curiosity. "Why did it work for this person" Why did it also work for these other people?" Is it all just coincidence or psychosomatic?" Maybe there is something there. HOWEVER, science and curiosity can end swiftly where profit motive (guaranteed returns for drug research for patentable synthetic substances) and professional orthodoxy (enforced by fear/peer pressure) enters in. No one wants to be called a quack. (Did you ever hear the NPR story about MD's in New England performing histerechtomys way beyond what was statistically called for in their client population--like almost every women in several counties getting one--because the monetary feedback was soooo positive the MD just went with the flow...)

Orthodox allopathic medicine can be quackery but acceptable quackery. EG: a decade(?) of hormone replacement therapy considered the way to go and effective--then suddenly gone! Off label drug use is commonplace in mainstream allopathic--where are the double blind placebo controlled studies for all that? Yet common and accepted (quackery). It's only quackery when its natural and "alternative". It's only worthless over-reliance on 'anecdotal' evidence when its not increasing drug sales... or you explain why its okay with drugs and MD's but its not okay when its alternative and based on studies with acylovir halting Menieres symptoms by beating back herpes virus (in Japan)?

Sincerly, i don't mean this as a personal attack on your integrity--this is aimed at a mindset. The medical equivalent of the "sun rotates around the earth" orthodoxy which holds sway until it finally caves in because uhmm how many tens of thousands die each year from drug reactions, interactions, taking drugs to relieve the symptom of other drugs that are relieving the symptoms of other drugs...

I am sure you are helping many people with your ENT advice and i mean that. I appreciate the doctors and hospital care
that I have recieved over the years--almost always caring and professional--and in certain situations the only and best way to go. I just think you struck out on this one.

sincerly,
dmb

ps: recommending an alternative approach isn't thin ice for someone who has tried what there doctor recommends and the next step for their deteriorating hearing is chopping up their inner ear. Before getting destructive surgery trying something like i recomment that cost virtually nothing would be common sense.

One last thing: i don't manage my tinnitus other than the Menieres regimen taken... it's gone and hasn't come back. You should try it! I won't tell.
 
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Rod Moser, PA, PhD replied to Dugmountainboy's response:
You are certainly entitled to your opinion, my friend, and of course, entitled to treat yourself anyway you choose. Many people chose homeopathic and naturopathic treatments over traditional therapy. I haven't jumped on this alternative bandwagon because I have not seen any of those large, double-blind studies from Japan or Europe that you apparently have read. My training and my practice is Western oriented -- evidence-based medicine. I am not a quack nor do I tolerate quackery -- in allopathic OR alternative care.

I do try not to pooh-pooh alternative approaches, but there really is an abundance of snake oil and nostrums out there that does not flow easily through my skeptical filter. If my patients want alternative medicine such as homeopathy, herbs, or whatever, they need to go somewhere else, since I do not provide that service.
 
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bluemuse replied to Rod Moser, PA, PhD's response:
I am astonished by the ignorance the so called medical profession has on the topic of Meniere's. I was stricken with this malady last Summer and suffered for 6 months straight before finding a cure for MYSELF. I went to the California Ear Institute in Palo Alto and was seen by a very self important, Harvard trained ENT. He basically told me to not eat salt, take a round of Prednisone and live with it. Live with muffled hearing, vertigo, tinnitus, etc., etc. I refused to just let this take over my life and through my OWN RESEARCH over a 5 month period found several MEDICAL STUDIES from abroad about Valtrex as a cure. I told my Doctor to prescribe me with the Valtrex, told him the dose, and told him the duration of the treatment I should have. He was skeptical (surprise, surprise) but went along. After just three days on the Valtrex, the feeling of constantly being on a ship in the ocean ceased. Within two weeks all of the other symptoms were gone. I just finished 9 weeks on the Valtrex and have taken myself off of it. I am cured. People, don't listen to arrogant, self important shmuck "Doctors" that don't care one iota about this disease. Be proactive and at least try the antiviral route. I had no side effects from the meds and am now cured. Meniere's is most likely a herpes virus that lays dormant at the base of the spine and attacks your ear during a time of stress. I had a horrible flu virus prior to my first attacks. Just so you know, my well trained ENT is now using the Valtrex in his arsenal against Meniere's due to MY RESEARCH AND LEARNING. Doctors are not Gods... take matters into your own hands and don't listen to their BS. "Don't eat salt" is not a cure.
 
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Rod Moser, PA, PhD replied to bluemuse's response:
I fully support the "involved patient"....the more the patient actively participates in their own care, the better. When those trials of new medication, including antivirals, involve a prescription, then you will need to find a supportive medical provider willing to prescribe it for you.

I commend you in doing your own research, but not all research studies are what they appear. You have to dig deeply in the methodology, the size of the study, and the controls. Medical practitioners are scientists and tend to believe SCIENCE, but sometimes you have to stretch the bounds of science and go on faith.

I do take offense at the smuck doctor attack. The best medical providers approach the care of patients with open-mindedness and sincere caring. Yes, some doctors are arrogant and close-minded, so you should not pick one of those people to be an invited member of your care-team.

I am glad that an anti-herpetic drug helped you, but your favorable response may not be dupicatable in others, sorry to say. Not all humans are the same; doctors OR patients.

Please post six months or a year from now, so that I know your Menieres remains in remission.
 
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NapyBlue replied to bluemuse's response:
Please post the specific recommendation you followed for the Valtrex regimen. Any links to the studies you read would be appreciated. Does your Meniere's remain in remission?


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