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How is the drug in the Menieres drug trial SP1005 working for you ?

Discussion in 'Your Living Room' started by yellowboy, Nov 2, 2023.

  1. yellowboy

    yellowboy Active Member

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    I wanted to start a new thread on this topic as the one below is long and dated. Please stick to this topic if it applies to you - IE: you are on the drug or have questions for those that are. We all need to know if this drug is helping anyone.

    Here is my update:

    As if yesterday I have been on the trial drug for 6 months. It has not helped me at all. My vertigo is under control with Betahistine and I am still on it. The trial drug may have made my tinnitus worse, as it increased after about 2 weeks on the drug.Other than that I have no side effects. When I went to my clinic in NC yesterday for the every 3 months check up and tests (Hearing, physical and blood work) I was given the option to sign up for another YEAR (yes year !) and I accepted it. Why ? Because having some hope with this damn disease is better than nothing !

    The clinicians are very closed mouth about how the drug is working on others, I usually ask questions but it's hard getting answers. Here is what I could get yesterday--

    IS THE DRUG WORKING ON ANYONE ? "Yes but mostly on vertigo, and then mostly on people who have had Menieres for a short time like 1-2 years. No one has said it is helping tinnitus or fullness". ( I have had it 6 years)

    (To the audiologist) IS ANYONE HEARING IMPROVING ON THIS DRUG ? "She said I am not allowed to answer that - ask a clinician" They could not answer that.

    WHO IS ELIGIBLE TO SIGN UP FOR A 1 YEAR EXTENSION "Anyone is has kept their appointments and records as required and has not requested many rescheduling of appointments".

    The trial continues ............
     
  2. bazookaman

    bazookaman Member

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    I just started my 2nd 3 month period. I don't think its doing much for me either. I had some initial dizziness when I started taking it three months ago. But nothin since. Before starting it, I was on the JOH regimen and a couple other things I picked up here. And thats been working for me. So starting this drug was just to see if it could add to what was going on with me. Bu so far, it's not been positive or negative.

    I too, have asked questions and only gotten very vague and general answers. My audiologist only tells me about my test compared to my other tests. Nothing else. So I usually don't even ask.
     
  3. Paul101

    Paul101 Member

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    Are you following the John of Ohio regime
     
  4. yellowboy

    yellowboy Active Member

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    No
     
  5. Mark55

    Mark55 Active Member

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    I am on month 5 now. I went into this trial dealing with menieres chaos. Since being on the real drug, I have not had a vertigo attack. Like Bazookaman, I dealt with dizziness off and on daily when I got on the real drug.
    As time passed, the dizziness passed. It took awhile, but never turned into anything. Important to note; I have been through a remission phase for 16 months or so, in the past. I know what that feels like. This is not a remission phase. Since being on SPI-1005 I can feel it working. It has taken some time to get to where I am on this drug. But each day seems to improve. For example, I was at the gun range doing some training with our church last week.. 14th of October, I was in the marsh duck hunting for opener. Took the wife to the theater a few weeks ago. Close to normal! Tinnitus still here. Comes and goes. Hearing slight improvement. Ear sensitivity comes and goes, but continues to improve. Even on bad days, I feel good for the most part! I still take a full regimen of vitamins and some supplements. Nothing else... If the good Lord continues to bless me with this stuff, awesome! I am thankful for every day that doesn't spin!
     
    • Like Like x 2
  6. Mark55

    Mark55 Active Member

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    @yellowboy,
    Congrats on the extension! 12 months is awesome!!
    When I did my phone review with my clinician, I asked about the extension and not much info received. I don't think they are allowed to say much in regards to successes and failures. Who knows....
    Big thanks for posting up the info and starting the new thread. Take care, Brother and congrats again for getting the extension.
     
    • Like Like x 1
  7. yellowboy

    yellowboy Active Member

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    Were you on Betahistine or anything for vertigo before the trial ? How long have you had Menieres ?
     
  8. Mark55

    Mark55 Active Member

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    I was diagnosed a little over 6 years ago. Actually, I think I had it long before diagnosed, just not any of the bad symptoms at that time. The only thing I was given by the ENT was a water pill and Meclizine if needed. Water pills never did anything for me. I think it was around year 3, after Vestibular Therapy training, Pycnogenol and vitamin regimen and very low salt no processed foods diet, I had the remission phase. It was great! Lived normally, ear was much better, but still maintained a low sodium diet. When things went chaos again, nothing helped. Tried JOH, different supplements, Upper Cervical again, but off and on bad vertigo, dizziness/tinnitus and ear fullness/sensitivity.
    I wanted to try antivirals but my docs said no.
    Only thing I still take 1000 mg of L Lysine with other vitamins. The only thing that stopped the vertigo was the SPI-1005, and like the next day.
    Side note: My Dad had Menieres. When he lost the hearing in the bad Ear, he no longer had symptoms. Crazy thing, when first diagnosed, his doctor told him that would happen...
     
    • Fistbump/thanks Fistbump/thanks x 1
  9. IvanNew

    IvanNew Active Member

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  10. yellowboy

    yellowboy Active Member

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    unfortunately no my tinnitus is raging today and I have fullness as well
     
  11. Mark55

    Mark55 Active Member

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    Well.... not sure what to think of my issues the last 5 days. Ear fullness came back again. 3 days ago I had a vertigo episode that lasted maybe 15 seconds. Stopped before I could get Meclizine out of my pocket. Very disappointed to spin again, but thankful it was short. 2 hours ago, wife and I were in Walmart and had a bad tumbling vertigo attack just as we were leaving but still inside. Of course I collapsed still hanging onto the cart. Wife had a hold of me and some good folk helped me up. That one was maybe a minute in length. Wife kept hollering at staff not to call 911, as I had vertigo. We got in the truck and wife said she should have told them I passed out from shock after the $200 grocery bill. Haha, gotta laugh cause that was a good one. Seriously, it was disappointing as I thought I had the vertigo thing under wraps with the SPI-1005. But I thank the good Lord for my good days.
    What have I done differently! Started taking Lysine again at 1000 mg last 5 days. Kicked it up to 1500 mg 2 days ago. Hmmm ... no vertigo last 4 months til Lysine. Could the virus be fighting back as JOH has mentioned when people got worse before getting better?? Interesting stuff. Thoughts??
     
  12. bazookaman

    bazookaman Member

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    When I started the JOH regimen back in July of last year, this is EXACTLY what I experienced. After taking the supplements for a couple weeks, my vertigo attacks began to increase til I was having them everyday. But I kept taking the supplements and they finally subsided. I'd go weeks between them. Then months. Its been a year now since my last attack. And even then, it was a relatively minor one.
     
  13. Mark55

    Mark55 Active Member

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    @bazookaman,
    Interesting stuff. May I ask how much you were taking daily? I'm only 1500 mg right now. Thinking about adding Monolaurine and NAC as well. I see the Neurologist Monday. I'd like to give the Betahistine a go as well, but unlikely that gets prescribed... Thanks for the feedback!
     
  14. bazookaman

    bazookaman Member

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    When I started, I took 500mg three times a day. But I eventually ramped it up to the recommended 1000mg three times a day. So now I take 3000mg daily.
     
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  15. IvanNew

    IvanNew Active Member

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    Hello colleagues, I think it would be better to use the JOH protocol thread to talk about these things and here only talk about 1005, which is the "new hope."
     
  16. Mark55

    Mark55 Active Member

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    Hey there, Ivan.
    Hoping you are having a great day! With all due respect , In regards to where I should post.... my discussion was with other SPI-1005 participants which I am one. While on this experimental drug, I want to know what other participants are using in addition to this drug. Especially when someone is having issues. Maybe a "New Hope" thread is in order. Hey, have a great and Blessed day!
     
  17. IvanNew

    IvanNew Active Member

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    Hello! How are you? News? 2024 is coming!
     
  18. yellowboy

    yellowboy Active Member

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    7 Months on the drug no change in tinnitus or fullness. I should just copy this sentence and use it every month !
     
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  19. IvanNew

    IvanNew Active Member

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    :(
     
  20. MrE

    MrE Active Member

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    Hi everyone, as I am 3 weeks from my 6 month mark on the trial drug, I wanted to provide an update on my condition. Overall, I believe it has helped me, reducing some of my symptoms. Ear fullness fluctuates, but generally it is better. Tinnitus has remained fairly constant, however, there are times when it is reduced. I also have Eustachian tube disfunction and that's the biggest change - the disfunction happens about 80% less than it did. When it happens it doesn't hurt. My hearing is likely unchanged.

    I was just informed that the study sponsors are extending me for another 6 months, which I will gladly take.
     
    Last edited: Dec 18, 2023

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