Discussion in 'ME/CFS Doctors' started by IreneF, Jul 5, 2017.
Is that 1 gram per day?
Oops! Sorry...fat fingers today. I take 2 450mg pills each morning and evening, for a total of 1.8g per day.
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.
@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.
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.
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.
@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.
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?
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.
You can also try a Google Site Search
Separate names with a comma.