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  • How many have been on Minocycline and Benicar?

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    Old 11-18-2008, 06:19 PM   #1
    kitty9309
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    How many have been on Minocycline and Benicar?

    It is my understanding that Mino is better able to penetrate the Blood Brain Barrier and the Benicar allows it to get deeper into the tissues.

    Thoughts?

     
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    Old 11-18-2008, 06:39 PM   #2
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    Re: How many have been on Minocycline and Benicar?

    I used a LLMD who uses this approach. Unfortunately, I developed a reaction to the Minocycline (and previously used Doxycycline), so we had to switch to Cefzil, Benicar, and Tindamax.

     
    Old 11-18-2008, 07:06 PM   #3
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    Re: How many have been on Minocycline and Benicar?

    Thanks, Bill.

    I am a new patient of your doctor.

    Did you get good feedback from Dr. M regarding symptoms and reactions?

    How do you get hold of him if a problem arises? Is the staff helpful?

     
    Old 11-18-2008, 07:25 PM   #4
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    Re: How many have been on Minocycline and Benicar?

    Quote:
    Originally Posted by kitty9309 View Post
    Thanks, Bill.

    I am a new patient of your doctor.

    Did you get good feedback from Dr. M regarding symptoms and reactions?

    How do you get hold of him if a problem arises? Is the staff helpful?
    He had me keep a daily log of symtoms so we could see how things were progressing, and he was receptive to seeing the logs.

    Initially I was able to get ahold of him via Email, but I think that now he's so much busier than he used to be, that email isn't a good option if you're in a hurry. He now has a staff member to answer patient requests and supposedly streamline things a bit.

    I have had mixed results with the staff; there have been some significant snafoos. But you get that in most Dr's offices nowadays. Best bet is to call and be persistent. If you can't get into see him, sometimes he can do a phone consult (he does charge for these sometimes); he's done several with me - it's over an hour and a half drive and sometimes an in-office visit isn't warranted or feasible.

     
    Old 11-18-2008, 07:42 PM   #5
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    Re: How many have been on Minocycline and Benicar?

    Quote:
    Originally Posted by Bill S View Post
    He had me keep a daily log of symtoms so we could see how things were progressing, and he was receptive to seeing the logs.

    Initially I was able to get ahold of him via Email, but I think that now he's so much busier than he used to be, that email isn't a good option if you're in a hurry. He now has a staff member to answer patient requests and supposedly streamline things a bit.

    I have had mixed results with the staff; there have been some significant snafoos. But you get that in most Dr's offices nowadays. Best bet is to call and be persistent. If you can't get into see him, sometimes he can do a phone consult (he does charge for these sometimes); he's done several with me - it's over an hour and a half drive and sometimes an in-office visit isn't warranted or feasible.
    I agree with your comments on staff and doctor's offices nowadays. It is unfortunate, but true.

    I do plan to ask him specifically how to get in touch with him in an urgent situation. When I went to Hopkins 2 years ago, they were all interested in me in the office. Then I was dropped like a hot potato even with an urgent drug reaction.

    How often did he see you back following the first visit? Sorry for all the questions. I am strung a bit tight waiting for treatment and want to cover all my bases.

    I am so glad to have come across you on this forum.

    Kitty

     
    Old 11-19-2008, 04:54 AM   #6
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    Re: How many have been on Minocycline and Benicar?

    Quote:
    Originally Posted by kitty9309 View Post
    I agree with your comments on staff and doctor's offices nowadays. It is unfortunate, but true.

    I do plan to ask him specifically how to get in touch with him in an urgent situation. When I went to Hopkins 2 years ago, they were all interested in me in the office. Then I was dropped like a hot potato even with an urgent drug reaction.

    How often did he see you back following the first visit? Sorry for all the questions. I am strung a bit tight waiting for treatment and want to cover all my bases.

    I am so glad to have come across you on this forum.

    Kitty
    He saw me monthly for followups; they were typically 45min appts. Then it backed off to every 8-12 weeks, now I'm on phone consults every 3 months. I'm due for a followup shortly.

    Oh the story I could tell you about Hopkins and the way they treated my mother in law who had a very rare brain lymphoma...let me say that their reputation is overrated and undeserved in my opinion. If they'd treated a dog the way they treated her, they would have gone to jail.

     
    Old 11-19-2008, 09:27 AM   #7
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    Re: How many have been on Minocycline and Benicar?

    Quote:
    Originally Posted by Bill S View Post
    He saw me monthly for followups; they were typically 45min appts. Then it backed off to every 8-12 weeks, now I'm on phone consults every 3 months. I'm due for a followup shortly.

    Oh the story I could tell you about Hopkins and the way they treated my mother in law who had a very rare brain lymphoma...let me say that their reputation is overrated and undeserved in my opinion. If they'd treated a dog the way they treated her, they would have gone to jail.
    Yeah- Hopkins. I was so psyched to go there based on their "reputation". I wasted a lot of time waiting for my appt and then a lot of money for nothing.
    Sorry to hear how your MIL was treated. What is with that? Unacceptable.

    Does Dr. M say how long you will need follow up? Does he do any further testing now that you feel well? Or is it just to verbally follow up?

    Did Dr. M ever say that the length of treatment always correlates to how long you have been infected? (14 years for me!) It seems if you get the right meds to target the cyst and spirochete, as well as treat any co-infections, the time would be near the same. Except, I guess, the time for the immune system to heal. I don't know if that prolongs treatment time. (I hope that made sense.)

    Did you have any co-infections?

     
    Old 11-19-2008, 10:38 AM   #8
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    Re: How many have been on Minocycline and Benicar?

    Quote:
    Originally Posted by kitty9309 View Post
    Yeah- Hopkins. I was so psyched to go there based on their "reputation". I wasted a lot of time waiting for my appt and then a lot of money for nothing.
    Sorry to hear how your MIL was treated. What is with that? Unacceptable.

    Does Dr. M say how long you will need follow up? Does he do any further testing now that you feel well? Or is it just to verbally follow up?

    Did Dr. M ever say that the length of treatment always correlates to how long you have been infected? (14 years for me!) It seems if you get the right meds to target the cyst and spirochete, as well as treat any co-infections, the time would be near the same. Except, I guess, the time for the immune system to heal. I don't know if that prolongs treatment time. (I hope that made sense.)

    Did you have any co-infections?
    No coinfections, lucky me.

    I don't recollect him mentioning a specific length of time for treatment, though he did mention possibly having to take immune-boosting herbs long-term to help keep my immune system up to par in case there were any surviving spirochetes/cysts. Discouraging, but there simply isn't a reliable way to declare that someone is "cured or not".

    As for the mother in law, best I not give alot of detail on a public forum lest some Hopkins-lackey attack me or even say I'm slandering them. But the gist of it is giving alot of false hope, their stupid team approach wherin no one is in charge of decisions and no one is in charge of dealing with the patient's family, their inability to think outside the rigid box, grossly negligent staff, and lousy hygiene in the ward.

    I wouldn't take my dog to their cancer ward. Now the neurosurgeon she initially saw, he was excellent, but the nursing staff supporting him was mostly fair-to-middling with one great nurse.

    Last edited by Bill S; 11-19-2008 at 10:38 AM.

     
    Old 11-19-2008, 01:42 PM   #9
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    Re: How many have been on Minocycline and Benicar?

    Glad to hear there were no co-infections.

    Sorry again on the care of your MIL. There is no excuse for that.

    Thanks for patiently answering all my questions!

     
    Old 11-19-2008, 02:59 PM   #10
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    Re: How many have been on Minocycline and Benicar?

    Quote:
    Originally Posted by kitty9309 View Post
    Glad to hear there were no co-infections.

    Sorry again on the care of your MIL. There is no excuse for that.

    Thanks for patiently answering all my questions!
    You're welcome.

     
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