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.
I am not at all happy with Dr. Bonilla. He dismissed all of my concerns and just ran his own "tapes" about how to treat ME/CFS without taking anything I was saying into consideration. He said "we do NOT treat Lyme disease here. You have CFS, not lyme." That is not true, I've had lyme and co's since 1991 with many positive tests. I also did not like that he laid me down on the exam table and talked (literally) down to me for quite some time. It was disturbing. I really liked Katie. I could communicate very well with her.
I have so many variables in the mix of my disease and my course of treatment and I'd like to have a doctor who will listen to me. I have an appointment with Montoya next January. That's a long time to wait. I'm on LDN and experiencing some interesting things, but not any improvement in my fatigue. I'm sleeping soundly for 10 or more hours at night but not waking rested. My dreams are CRAZY VIVID! I'm more tired by the end of the day than ive been off the LDN. Is there a LDN thread that you know of? Thanks.
That's odd. Montoya mentions Lyme here:
There are several threads on LDN here. You can use the search feature to locate them.
You may also be interested in this:
The XenForo search function (at present) doesn't search for 3 letter words and Google Site Search (which does) needs to be updated (plan in place). So for the moment the work-around that Hip posted is the best way to search for 3 letter words:
@toolongtotell I am sorry you had that experience with him. I am glad we have the forum here to discuss this. it can be traumatic (at least for me) having an experience like you had.
i can't remember if they send us a follow up questionnaire about the visit or if there is some place to submit feedback? is Katie still there? can you work with her?
I remember when i started LDN I too had vivid dreams.. i actually enjoyed that. I dont seem to have those any more, I have been on the LDN for a while now..not sure it makes a difference or not..but it sure does make a difference with my budget. it gets expensive.
I felt really depressed when i left my appointment with dr b. I was excited that I had worked up to 4000 steps a day (in divided doses) and he shamed ( or was very expressive ) about how important pacing/ was/ is. told me about a cfs women who didn't pace herself had a stroke , it killed her- when they looked at her brain they saw damages that wasn't explained by the stroke. it really upset me
he also discounted the c4a labs i had from my lyme dr.. in 2016 with moldy cabinets in my kitchen i was at 18000 .. after i replaced the cabinets the c4a levels came down to 800.. bonilla said "that decrease is from the famvir" but I showed him this was BEFORE the famvir..but after i took out the moldy cabinets. it was from the mold..but he wouldn't believe me.
I just heard Montoya talking about PEM at 1:09 in the video. (he phases it much nicer than DR. B did)
thanks for sharing those videos @Learner1
according to the video it sounds like maybe they are trying to get more medical staff on the team to help us?
PS there is a facebook fourm for people who are working with Stanford cfs clinic. I think there might be a facebook LDN group too but not sure if any of that is helpful.
in the video Montoya mentions the info he got from rheumotogist about using Tofacitinib to tamper down the cytokine response. I wonder why they are giving plaquenil instead?
Yes, I noticed right away that I could not search LDN. Bummer.
I'm sorry you had a similar experience to me and I would be upset too. I can TOTALLY see him telling you that story. Very inappropriate. Katie is no longer there. Can you post links to the FB groups? Dr. B also wanted me to take Arava but I freaked out in the waiting room when I read about the liver toxicity. I told the receptionist to tell him I would not take it. I never heard anything from him regarding this.
I was prescribed ARAVA by Dr. B, but I wont take it due to liver toxicity.
Thank you! I was actually at the clinic and saw Dr. B the day of this lecture but couldn't stay that late to attend. I haven't yet watched the Horowitz video, but I am familiar with him from Lyme circles. Thank you for including them in your reply. It makes it so much easier for me to return and watch bit by bit.
I kind of can't believe I'm here, it's starting to sink in, slowly, and that leaves me rather depressed. I worked very very hard to not be diagnosed with CFS because I had such clear lyme and co's testing, even had it show up in my spinal fluid. But treatment did very little. I also was ferociously bitten by black biting flies in 2001 and had flu symptoms after. I have always suspected that there is a disease they transmitted to me that is not yet known. And I also got herpes 1 (in my nose) around that time and was not treat for years and then undertreated for it until being seen at Stanford. I don't see where Montoya speaks about lyme except to say they thought and treated this woman for lyme at first because of her extensive hiking. But he does not mention lyme as a co-existent disease or one that should be addressed alongside ME/CFS.
Montoya said that all new patients are tested for NK cells. I was new in October. They ran over $10,000 worth of blood testing and NK cells was not one of the tests. I can not afford more testing at this point.
@toolongtotell let me do this now before i forget.
here is a yahoo ldn group https://groups.yahoo.com/neo/groups/LDN_Users/info
not sure how active.
facebook for LDN this is one of a couple i saw
facebook for stanford patients
i thought NK cells might be covered through insurance, but i guess it all depends on what insurance folks have.
i can relate to being bit by something and getting sicker afterword and feeling like there is a missing piece. I had that happen on a beach in northern californa.. i think maybe there were sand flies or fleas i dont konw..but went downhill since then.
I have been working with a mold/lyme dr and we found i do have issues with mold that most people dont .. getting rid of some of that helped.
also i want to try the dynamic neural retraining to gupta amydgala retraingn, makes sense to me how the brain can get stuck in the "alert " mode and cause a cascade of effects in the body. 2 of the local lyme dr's have been recommending their clients do this. they say they have seen good results. i can't seem to get myself to got through the motions though.
be kind to yourself
I am sorry that Katie is no longer there. Neither is Jane Norris. I wonder where they went. I had heard good things about Katie someone else had mentioned how they liked her. I wonder if Amity Hall is there? i met with her once.. she seemed ok felt she was encouraging.
@toolongtotell did he say why he wanted you to try the Arava ? i think if he would explain..or if i was better at playing "doctor tennis" i could ask him to explain.. what is the benefit of this.
for me he offered the plaquenil..and you the arava.. i wonder what he uses as determining factors.? there must be a reason.
You can also try a Google Site Search
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