New doc at Stanford

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toolongtotell

Messages
16
cb2 said:
@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.
LDN info
http://www.ldninfo.org/

facebook for LDN this is one of a couple i saw
https://www.facebook.com/groups/108424385861883/

facebook for stanford patients
https://www.facebook.com/groups/1550174075032006/

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
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wow! lots of info thank you!!!
 
T

toolongtotell

Messages
16
cb2 said:
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.
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He only said that it was "an anti-inflammatory that would be helpful."
 
C

cb2

Senior Member
Messages
384
on the 5th day of taking plaquenil i woke up feeling like i had been hit by a truck.. even my eye lids hurt. and stomach upset. I stopped the plaquenil Tuesday and am feeling a little better today. I dont know if it was the med or some "flu" stanford dr said it was a "crash" and i wasn't pacing enough. i have never had eye pain and nausea with a crash.. or muscle aches to the degree i had. this is discouraging to have a "cfs" dr blame me and not validate the mediation reaction... but perhaps i have / had some kind of flu? I wonder if this dr will be in this department at stanford for long ? if he doesn't get med sensitivities with the cfs patients.
 
EsetIsadore

EsetIsadore

Messages
45
I have remained very unimpressed, on the whole, both with Dr. Bonilla and with Stanford’s ME/CFS clinic. I still have an unresolved HIPAA complaint with them, as they lost my medical records. More recently, I had to pull my records to apply for SSDI and found very problematic errors (including a notation that my full-time disability began a full year after it actually did) and omissions (largely stemming from their failure to input information I got to them a second time after they lost it the first). Despite repeated requests (and now again involving their HIPAA compliance), they have not fixed these. Moreover, it’s all showed me that Dr. B really doesn’t know or grasp my case. I cannot trust his recommendations because they’re not grounded in the realities of what’s happening in my body; instead they’re ideas he seems to want to impose cookie-cutter style onto my body.

Is Dr. Montoya less like this? Is it possible for us to switch from one to the other?
 
theduckopera

theduckopera

Messages
2
Location
San Francisco
I'm another Stanford patient who's rapidly becoming disillusioned with the level of care there. I didn't find out that Katie had left until a few days ago, despite being her patient and having an appt with her in a week. I complained a whole bunch and managed to get a phone appointment with Dr Bonilla yesterday, but his recommendations leave me a little confused.

Like some people here, he wants me to try the Arava. No reason given except that it's a good anti-inflammatory, and since I reacted badly to antivirals that's the next step he'd try. However he also wanted me to restart LDN, which did nothing at all for me, because LDN + Arava could have a 'tiny added benefit'. I'm not sure if that's worth all the risks of Arava, and all the effort of restarting LDN? Has anyone else heard of this LDN + Arava combo and whether it's actually something worth trying?
 
C

cb2

Senior Member
Messages
384
since i did not tolerate the Plaquinel Dr. B suggested I try the Arava as well. I have a past history of hepatitis that makes me a bit more anxious about trying the Arava. He said he respected my decision and that they "monitor" for potential side effects. @theduckopera did he also order labs for you to monitor the Arava? I think if i didnt have a history of Hep i might try it. or maybe i will decide to try it anyway at some point.

for me I am pretty aware if something is giving me a bad reaction or side effect...but i just looked up Arava and seems like it really stays in the system a long time. maybe you could make new thread called Arava and see if anyone has used it? I dont know. ... good luck with your decision.

"However, keep in mind, if you were gaining any benefit from leflunomide, it will usually take at least 6 weeks to lose it. If you are stopping because of more severe side effects, your doctor may recommend a medication regimen to clear the leflunomide out of your system, as it can otherwise remain in you for 1-2 years."
 
MeSci

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,233
Location
Cornwall, UK
cb2 said:
"However, keep in mind, if you were gaining any benefit from leflunomide, it will usually take at least 6 weeks to lose it. If you are stopping because of more severe side effects, your doctor may recommend a medication regimen to clear the leflunomide out of your system, as it can otherwise remain in you for 1-2 years."
Click to expand...
I looked for a reference to this and found it/one here: https://albertarheumatology.com/leflunomide/
 
el_squared

el_squared

Senior Member
Messages
127
theduckopera said:
I'm another Stanford patient who's rapidly becoming disillusioned with the level of care there. I didn't find out that Katie had left until a few days ago, despite being her patient and having an appt with her in a week. I complained a whole bunch and managed to get a phone appointment with Dr Bonilla yesterday, but his recommendations leave me a little confused.

Like some people here, he wants me to try the Arava. No reason given except that it's a good anti-inflammatory, and since I reacted badly to antivirals that's the next step he'd try. However he also wanted me to restart LDN, which did nothing at all for me, because LDN + Arava could have a 'tiny added benefit'. I'm not sure if that's worth all the risks of Arava, and all the effort of restarting LDN? Has anyone else heard of this LDN + Arava combo and whether it's actually something worth trying?
Click to expand...

Hi, Dr. Bonilla just prescribed me Arava as well. Because I react badly to the antivirals. Have you been on Arava? Wondering if you tolerated it and if it has helped...
 
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