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Antiviral preference?

Discussion in 'Your Living Room' started by Fisherman42, Nov 14, 2020.

  1. Fisherman42

    Fisherman42 Active Member

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    Hi all! CVS just threw me a curve ball, I’ve been taking valacyclovir (Mylan) and been alright and now they can order it anymore. I can get it through another chain or I can switch to Northstar. Thoughts on brand and will I take a nose dive while waiting for a new brand to kick in. Camber is all CVS can get and I crashed last time I switched to that. Thanks all!
     
  2. IvanA

    IvanA Member

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    I found studies months ago that ordered efficacy in this order:
    1- Valtrex
    2- Generic Valacyclovir *
    3- Famcyclovir
    4- Acyclovir.

    * Several users reported years ago that when the pharmacy gave them valaciclovir from the Mylan laboratory they experienced relapses so that brand is not recommended here. But you say that it has worked for you, perhaps they have changed their formula. In any case, switching to another laboratory should not be bad for you.
     
  3. JohnL999

    JohnL999 New Member

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    If Acyclovir is the least effective I wonder why that is what Dr. Gacek (the son in Mobile) is prescribing to me. I am 5 weeks in. I have had some good days but just when I think I've finally turned the corner i am getting pressure in the left ear and 'ringing sessions' again. I went through 2 weeks with no pressure at all. I felt great other than getting a little lightheaded at times and now I'm back to the pressure going on 4 days in a row now. All of this started after them blowing LOUD warm air into my ear in the VNG test I had last Thursday. The hissing tinnitus that was gone for weeks before hand came back the next day and the stuffy ear appeared a few days later. I hate taking all of these tests because I feel like they make things worse.

    I know many ppl with antiviral success say it may take months but it is so very hard going through this period not knowing if you are really getting better or not. I wish the doctor would prescribe me the other medicines if they are more effective. He always talks about trying to keep costs down for his patients but with my insurance 90 acyclovir tablets cost me $2.28. I wouldnt mind paying quite a bit more for more effective relief!

    I will add that the first bottle of my acyclovir was from the Carlsbad brand, the 2nd bottle was Camber. I take 3 a day so 90 lasts me a month.
     
  4. IvanA

    IvanA Member

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    There is no big % difference in success between different brands of antivirals. If you have started acyclovir, continue with it for at least 6 months, if by then you do not feel that it has worked, switch to Valtrex or Famciclovir since, in exceptional cases, they have reported that changing antivirals worked for them, but this change is not related with the greatest effectiveness of studies, there are people who did not work Valtrex and acyclovir did.

    If your insurance covers acyclovir so cheaply and you are lucky enough to have prescriptions for it to be given easily, I would have no doubts and would take acyclovir for several months. I know this disease is hard, but it is hard for everyone not just you, be patient and consider yourself lucky to have prescription antivirals. Many of us here are paying a lot of money for antivirals without a prescription that we find difficult to get, others are importing them from India without knowing very well if it is a good supply and many others have to be 6 or more months with lysine supplements and other things without knowing either if they really will work.

    If we knew that something works directly and easily this forum would not exist. Take your antivirals for 6 months and consider yourself lucky to have a good opportunity there, if it works perfect and if it doesn't work you will only have lost 12$? and time, it is not that there is another "treatment" that will cure it for sure in all this time.

    Patience and good luck.
     
    • Agree Agree x 1
  5. Donamo

    Donamo Member

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    Hi JohnL. I agree with most of IvanA's post, you are very fortunate to have Dr. Gacek. However, if I was in your position, I would ask for brand name Valacyclovir the next time I saw the doctor, or sooner. Even if I had to pay extra because my insurance won't cover it, I would pay the extra with a smile on my face. If he absolutely won't prescribe the brand name ( I expect he will, why wouldn't he? ), then get the generic Valacyclovir. Ivan is 100% correct that this all takes time, but I would not like to waste any on an antiviral that could be better.

    Back around 2014, House Ear Clinic in California was going to run a double blind test for anti-virals and Meniere's but the funding did not happen. At any rate, it is my understanding that they prescribed Famvir. The generic is Famcyclovir and that is what I have had success with.
     
  6. JohnL999

    JohnL999 New Member

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    Ivan / Donamo;

    My post was not meant to lament the cost of the drugs, I was saying I would gladly pay more to get something that might be more effective. Again I'm only 5 weeks in so I don't really know how to gauge whether this is working or not. Every time i feel normal for a few days the symptoms return again. I guess if I really think about it, i have never have gotten as bad as I was before starting the antivirals. It's fear and anxiety on my part that I will end up being one of these 10% that the antivirals don't help. I am very thankful I live close enough to Dr. Gacek to be able to get a prescription rather easily.

    Unfortunately I have always been an anxious person and one of those 'glass half empty' types so going through something like this is very hard for me (as I'm sure it is for all of us!!!).
     
  7. IvanA

    IvanA Member

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    Five weeks is nothing of time and recovery is not instantaneous, if you have read something in this forum about people who used antivirals you will know that most of their symptoms worsened during weeks 2-4 thereafter they were slowly improving.

    If you are unlucky that AVs are not your solution, you cannot sink, you must keep looking and trying things (allergies, stress, fungi, intestinal health, etc.) and if nothing works injections or surgery and a cochlear implant. Although the statistic says that 80-90% improve with AV and there is also another statistic that says that 80% of Meniere improve on their own after a few bad first years (you can spend these first years taking vestibular sedatives for example). There are many options and things to try, none of them are 100% what we are looking for (a total cure), but they can allow us to live and lead a normal life at 90%. On the other hand, there are three powerful projects underway to help Meniere's patients and there will be many more, the future and the research are in our favor. If there is no cure today, there may be one in a few years.

    The three ongoing projects:
    1-A new injection of corticosteroids that, unlike the current ones, are released delayed for 3 months, which allows the inflammation to be kept low for a long period of time with only 3-4 injections per year. In 2021 the data for phase 3 will be released.

    2-A new type of oral anti-inflammatory, SP-1005, which has given very good results in controlling vertigos, slightly improving lost hearing and tinnitus tone. 2021 phase 3 data is released.

    3-Genetic research to locate the genes responsible for Meniere's disease. This would allow, on the one hand, to clearly diagnose who has Meniere and who does not, on the other it would allow the development of treatments, obviously these treatments would still take years, but it is the way. Genetic research data comes out in 2021 as well.


    Things that are not related to Meniere directly, but could help: In medicine there are new fields to explore and a lot of money is going to go into research thanks to the human "nonsense" of wanting to eat a plate of beans on a ranch on Mars. Great advances are taking place in nanomedicine and new drugs.

    That everything could come out and nothing work? Of course, but honestly I have enough with my tinnitus and get dizzy from time to time to obsess over living thinking that everything is going to go wrong. I have just started this adventure, I will make sure to give it a happy ending.
     
  8. JohnL999

    JohnL999 New Member

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    Thanks Ivan I feel better about that. The Dr. just really didn't give me any information at all on how the medicine is supposed to work and what the timetable was. I just wish there was something that would tell me for sure this was working.
     
  9. Mindosa

    Mindosa Member

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    Unfortunately antivirals are not a help for everyone and I think it's far from it. If there were 80-90% success rate with AVs, then it would be standard protocol treatment for MD with antivirals and there would be no such forum need.

    According to Richard R Gacek publication, the success rate is only about 39%. But I believe if there were quality double blind study with thousands participants, this percentage was way more smaller.

    Just give me a figure. Chances of Antivirals working.

    Unfortunately everything is not that simple with MD.
     
  10. IvanA

    IvanA Member

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    Regardless of the %, the viral cause is the one with the most reports of success and of working "fast" in this forum. Either taking Antivirals or the JOH regimen, the vast majority control their vertigo / dizziness and all count the same: First two or three weeks worsening of symptoms and then slowly improving. People who after this live with a maintenance dose of antivirals or lysine have never reported a relapse, instead every couple of weeks we have someone return to the forum reporting that their Meniere has returned after having overcome it years ago taking AV and leaving to take them for a confident time that he was already cured.

    Not all the Menieres are due to a viral cause that we all know, but the first step to rule out is the viral cause because it is the most likely among the people on this forum. And we are not going to find studies that say what are the most probable causes of Meniere when officially for doctors Meniere is a disease with unknown cause.

    If the AVs do not work, the next steps would be to look for allergies, fungi, change the diet, etc. But the most likely, easy and quick thing is to take AV for a few months, especially if you have prescriptions and you don't have to look like a drug dealer to get them.
     
  11. Mindosa

    Mindosa Member

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    My point is here, why are there no quality double blind placebo studies with antivirals for Meniere's disease and FDA approval?

    Maybe the science world is thinking it can't be just herpes virus cause in MD? But why, if there are reports that AVs are working in MD cases? Is it arrogance or something else we don't know?

    But why then antivirals producers didn't make quality double blind placebo studies with antivirals like there are now with FX-322, CGF166, LY3056480, DB-041; DB-20, SPI-1005, Oto-413 and others? Is it because Meniere's disease is so rare and not worth bothering, because the studies will not pay off? But why then do all others above mentioned studies exist and even if the MD causes in different people are different?

    I don't know, maybe I am missing something here, so it would be interesting to hear other opinions why there are no FDA antivirals approval for Meniere's disease yet?
     
    Last edited: Nov 21, 2020
  12. Pa Cowboy

    Pa Cowboy Member

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    Not sure what the correct answer is to your question but my opinion is the answer goes something like this, "Follow the Money".
    The number of Meniere's patients is small, antivirals are relatively cheap, there's just not much money allocated to Meniere's and not much money to be made by proving antivirals help with Meniere's.
    Another thought is this Forum might be on the cutting edge of putting forth the idea that antivirals can and do help.
     
  13. IvanA

    IvanA Member

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    If you send enough money to a university or to Dr. Gaceck he will be happy to do this study. Why are there already three vaccines for Covid with a high rate of effectiveness in just 9 months?

    The largest study to discover which genes are the cause of Meniere has had to be financed with public money and fundraising from Meniere's Associations of patients in Spain and the UK that contributed more than $ 30,000. Why don't the States finance this type of full investigations? Don't you expect them to be of any use? ;)

    And if the viral theory were completely ruled out, why does it appear in recent Medical PhDs as one of the possible theories?

    Anyway I think you are not understanding the viral theory about Meniere. This theory does not say that a virus is the sole cause of someone with Meniere or that everyone who has our disease has a virus as a cause.

    The current theory about Meniere is that it is a multifactorial disease, that is, it is caused by one or more phenomena, to which the patient's immune system is not responding correctly. The theory says that if you find your causes and treat them you will control the disease and alleviate the symptoms, not that you will be cured because your immune defect is there forever until medicine can find it and cure it (genetic therapies with viral vectors).

    Why is it recommended to start with AV or JOH and not for other causes? Because the reports of users who controlled their disease here are mostly those who treated the viral cause. Besides, it is one of the easiest causes to rule out before moving on to others.

    It is not as if you could propose a better and more reliable alternative because if that existed this forum would not be necessary. There are people who improved by treating their intestinal health, there are people who were completely cured by leaving gluten, others by treating their teeth, etc. But they are not the majority of reports that we receive, so I would recommend starting with AV and if they do not work, then looking at the intestine, allergies, etc. I'm not ruling out the rest of the possibilities, I just optimize resources based on what seems to be working best here.

    I really do not understand what you are trying to generate so many doubts among people, optimism also helps to improve health, strengthen the immune system and better cope with a disease. If people are testing AV what they need is encouragement, not to be reminded that it might not work.
     
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  14. Mindosa

    Mindosa Member

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    Another question I have is about surgeries. Shunt insertion, sac decompression, and endolymphatic duct blockage (EBD) surgeries have quite high success rates of eliminating Meniere's attacks, especially the novel EBD surgery with the success rate of 90%.
    Surgery can't eliminate viruses, so I think the majority of reasons should be somewhere else.

    All these logical questions arose for me after reading tons of information about Meniere's disease.
    My point is here, maybe the virus theory is not as prevalent as a cause as we think?
     
  15. Mindosa

    Mindosa Member

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    Are viral-infections associated with Ménière’s Disease?

    One of the newest observational studies (2019) investigated whether viral-infections are associated with MD.

    Abstract
    Despite considerable research, it remains controversial as to whether viral-infections are associated with Meniere’s Disease. Here, we investigated whether viral-infections are associated with MD through a systematic review and meta-analysis of observational clinical studies using molecular-diagnostics.

    Conclusion
    The amount of data used to calculate this association was limited and this finding would in future need to be supported by more evidence, preferably too of a higher quality.
    Source:
    Are viral-infections associated with Ménière’s Disease? A systematic review and meta-analysis of molecular-markers of viral-infection in case-controlled observational studies of MD
     
  16. John of Ohio

    John of Ohio Active Member

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    Well, that meta-analysis (a study of existing studies) settles the question, does it not, that there is no "evidence" (existing, published, peer-reviewed studies) showing that herpes viruses "cause," or at least, are associated with cases of Meniere's disease.

    This paper serves no purpose. It is already "known" or recognized by the medical profession that Meniere's is, simply, "idiopathic," without any exactly known or knowable cause. Every published explanation of the cause of the disease involves a great degree of conjecture. Wikipedia: "The cause of Ménière's disease is unclear but likely involves both genetic and environmental factors." Here, the conjecture is some sort of undefined genetic or environmental factors.

    Has anyone done a real, double-blinded, randomized study of either Dr. Gracek's treatment protocol involving selected antiherpetic drugs? What are the chances of anyone doing a proper, double-blinded, randomized study of my Meniere's treatment regimen, which involves no prescription drugs? Will never happen.

    But, personally, I have kept records of the results of people diligently using my Meniere's treatment regimen. At the start, when I first posted the regimen, in 2000, I've invited users to tell me (through emails) their outcomes. All have been archived privately, with no attributed names or contacts; merely the results.

    I stopped taking these reports in 2018, with a total of 280 people with Meniere's reporting their results from the taking of my regimen of specified over the counter products. 247 reports were positive, meaning that useful or complete reduction in Meniere's symptoms occurred. 33 people reported no good results whatsoever; yielding for the regimen an 88.2% "success" rate.

    Of course, the central focus of the regimen was to inhibit herpes virus replication, by the means of lysine, a common amino acid. It is an established fact that lysine disrupts herpes virus replication.

    I'd be delighted to email, to physicians only, a 147-page PDF compendium of user reports of my Meniere's treatment regimen. Anyone of any sense, after reading several pages, will come to the accurate conclusion that for the majority of people properly taking the regimen, over 80%, it provided extremely useful treatment outcomes; better than any of the non-surgical outcomes of conventional "treatments."

    But, I'm only a field biologist; have no training or credentialed recognition in any of the medical sciences. Simply, no one is ever going to conduct a publishable study of my Meniere's treatment regimen (nor of Dr. Gracek's regimen, which centers on antiherpetic drugs).

    Personally, I've been free of every Meniere's symptom now for over a dozen years. Cringe if you will, but I cured my Meniere's disease. (And, yes, several ENTs properly diagnosed the disease in my left ear.)

    I wish everyone well attempting to solve their Meniere's problems. Best of luck with all that conventional protocols offer: first, the LSD approach, a low-salt and diuretic treatment. That almost always fails, so next will be some powerful drugs to suppress symptoms, all of which also have side effects; which can be as bad as the symptoms. Lastly, when all of that fails, various surgical procedures will be offered. Very expensive and uncomfortable. Many of these can provide degrees of symptomatic relief, but there is always the possibility that symptoms will reappear in the contralateral, untreated ear.

    --John of Ohio
     
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  17. Mindosa

    Mindosa Member

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    Nice to meet you John!

    Well, this meta-analysis (a study of existing studies) it's a good overview about the possibility of virus involvement in MD from a scientific perspective (not anecdotal), and it’s recommended to read for everyone to better understand this theory.

    Now about the lysine - the central focus of JOH regime - how can we be so sure that lysine is the main reason for eliminating MD symptoms?

    Here I will express some thoughts from my critical and logical point of view and please no offence:
    • So, there is no united convincing evidence from the scientific perspective (not anecdotal), to support the virus theory.
    • Also, scientific papers about lysine therapy are somehow inconclusive and there is no united convincing evidence that lysine can be used to treat active herpes simplex lesions.
    Meta-analysis (a study of existing studies):
    Lysine for Herpes Simplex Prophylaxis: A Review of the Evidence (2017)
    Conclusion:
    Literature review uncovered no convincing evidence that lysine can be used to treat active herpes simplex lesions. In the absence of such research, on the balance of possible risk to benefit, clinicians could consider advising patients that there is a theoretical role of lysine supplementation in the prevention of herpes simplex sores but the research evidence is insufficient to back this.
    Lysine for Herpes Simplex Prophylaxis: A Review of the Evidence
    • JOH regime consists of 7 different parts - supplements, and lysine is only one of this list. From a scientific and logical perspective (not anecdotal) you need to test one thing at a time, so this meen only lysine and nothing else to be sure whether it is helping in MD case or not.
    • When my MD symptoms began I tought, that my food, environment and my bad habits could cause these symptoms, so I changed my diet, eliminated all junk food, coffee, tea, sugar, salt, household chemicals, hygiene materials and so on, I even moved to another living place for 6 weeks and didn't go to work.
      So I think a lot of us changed a lot of things like me desperately wanting to get rid of these symptoms and a lot of things could have contributed to the reduction of MD symptoms. So from the scientific and logical perspective (not anecdotal) when there are so many variables it's impossible to conclude, whether lysine is helping or not.
    Now about the JOH regimen’s 88.2% "success" rate. If there is such a high success rate of this regime, why does MD still exist? I mean, if with the JOH regime we can eliminate about 90% of MD cases, then fixing others left MD causes like tooth problems, TMJD, allergies, gut issues, mold, musculoskeletal imbalances, bacterial possibilities, autoimmunity, stress, etc. I believe we can solve more than 5% of left MD cases and therefore this disease should be practically eliminated.

    But why are we still struggling with this disease?

    With all due respect
     
  18. IvanA

    IvanA Member

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    Mindosa I still don't understand what you are trying to do. You yourself have shared other things you are doing in this forum (fasting, various antioxidants, etc.). So what is the problem? Only what you think can work is recommended? Furthermore, the same logic applies. If fasting is the solution to Meniere, why are there still people with Meniere?

    I have explained it to you a lot of times already: Antivirals may or may not work, but they are not Meniere's cure, but they have helped many to control their symptoms and return to normal life. This is a verifiable fact both by the JOH reports and by reading many threads on this forum from people who have their experience with AV. Nobody says that they work 100% or that they are the cure, but for many it works and there is no alternative treatment that has had such a positive response by the people who have tried them. On the other hand, something that doctors recommend such as a low-salt diet does not have such good results and if you look at this forum, everyone who tried AV before tried a healthy diet without alcohol, salt, sugar, etc.

    I guess you've already tried AVs and they didn't work for you, the number one rule of this forum is to report it, but not to make it a rule for everyone. I tried the CBC and it made me ring my ears and make me dizzy, however many people in this forum find it works as a preventative for vertigo and dizziness. There are people who have not worked for JOH or AV and have tried monolaurin and it worked, etc. So according to you, people should not try anything since whatever we try is not going to work because if it would work, Meniere would already be cured? Reason a little, you are the first in this forum trying things to see if they work.
     
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  19. Mindosa

    Mindosa Member

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    I see here a little bit of emotions and therefore some things are exaggerated and distorted. My opinion should not cause problems for you even when it not same as yours
     
  20. Nathan

    Nathan Active Member

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    Subsurface ocean, Europa

    [​IMG]
     
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