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New doc at Stanford

Discussion in 'ME/CFS Doctors' started by IreneF, Jul 5, 2017.

  1. Mariesak

    Mariesak

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    New Salem, Massachusetts
    Is that 1 gram per day?
     
  2. Learner1

    Learner1 Professional Patient

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    Pacific Northwest
    Oops! Sorry...fat fingers today. I take 2 450mg pills each morning and evening, for a total of 1.8g per day.
     
    Mariesak likes this.
  3. el_squared

    el_squared

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    Hi,
    I did a search on Bonilla and saw your post. I have seen Bonilla for a couple of visits. He pretty much gave me the same assignment -- coQ10, curcumin, med diet, dark chocolate, and valtrex.

    That was six months ago. I have struggled with the valtrex as it makes me so sick. I have not improved at all.

    I'm wondering if you have been helped by his protocol? I am going to see him next week and i'm wondering if he will have any other advice or prescriptions to offer.
    Laura
     
  4. cb2

    cb2 Senior Member

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    @el_squared I see Dr. Bonilla too. He swtiched me from acyclovair to famvir 500mg 2 x a day.. I seem to be doing a little better. I dont have as many sore throats. I also found mold in my apartment and my lyme dr prior to knowing about mold had ran a c4a test and my level was 18,000 after taking out the mold c4a is now at 2000. so not certain what is making the most difference. but i did notice what seemed like a direct connect with the famvir and less sore throats.
    i see dr bonilla in 2 weeks.. I hope you will report back here how your visit goes next week. I hope it goes well and I hope he has some good ideas for you. Please keep us posted.
     
    Mariesak likes this.
  5. el_squared

    el_squared

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    That's good you're seeing some improvement on Famvir. I was given Famvir back in 2015, then 2016, and to be honest I never stuck with it because I always felt bad. Right now I'm trying again, but just nibbling off maybe a fifth of a 500mg valtrex (generic) pill. Dr. Bonilla that I could do that to start low and slow. It has made my chronic pain flare up. It's hard to get going on because I'm back at work after being on a long medical leave and I want to keep my job. Maybe I should try famvir again -- maybe it would be more manageable.

    I was diagnosed with Lyme by non-insurance system "lyme literate" doctors. I did some treatment over the summer and my latest test was negative. But I never improved.

    I also have a history of mold exposure. I lived in a moldy apartment for 9 years or so, unknowingly, and left about a year and a half ago. Again I haven't really improved. My c4a was never elevated. I did do some antifungals as treatment, a sequence of three different kinds, and I did sort of feel better for a couple weeks. Hard to tell if that is why. The naturopath who I saw for Lyme know wants to treat me for heavy metals. The test I did with her showed high levels of mercury and lead and a few other things. Mainstream blood lab tests for metals are normal. but the alternative provoked test shows these high levels. Haven't done the chelation therapy yet. Trying to find a window of time over a long weekend, to start. I'm trying not to trigger a crash.

    Anyway, I will be sort of sheepish when seeing Bonilla as I have been inconsistent with the antiviral therapy. I am wondering if there are any other treatments they are trying other than antivirals.
     
  6. EsetIsadore

    EsetIsadore

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    I have chosen not to take the antivirals. For me particularly, he did recommend Bartonella treatment. He also recommended (and I am taking) low-dose naltrexone.
     
  7. cb2

    cb2 Senior Member

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    @el_squared wondering if you had your visit and how things went. I hope everything went ok?

    I am impressed you are back at work ;)
    i saw dr bonilla this week and he suggested adding Plaquenil to the famvir, was ok about it till i read some side effecdts. I am gonna see what my primary thinks.

    also My lyme/mold dr using byron white herbals to treat the virius.. he has me on byron White A-EB/H6 formula- had me titrate up slowly to 1 drop a day.
     
  8. el_squared

    el_squared

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    Hi,
    Dr. Bonilla wants me to basically do as before: take Valtrex and rest. I have not taken much Valtrex because it makes me sick and makes my chronic pain worse. And the messed up thing is that it's hard to take the meds because I have to maintain my job, at half-time at least. So I'm going to try again, taking maybe a fifth of a pill once a day and see how that goes. I asked about switching to Famvir but he dismissed that. He said maybe I can add an antiinflammatory after I've been on Valtrex for a while.
    Who is your Lyme/mold doctor?
     
    Sushi likes this.
  9. cb2

    cb2 Senior Member

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    what did he say about it making you sick and your pain worse? I wish there were better answers. I wonder why he wont let you try famvir, or acyclovair? does it depend on which of the virus are reactive?

    my lyme dr is Raj Patel in foster city.
     

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