• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

New doc at Stanford

T

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
Click to expand...
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.
Click to expand...
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
8,231
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...
 
You must log in or register to reply here.