Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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New doc at Stanford

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

  1. toolongtotell

    toolongtotell

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    wow! lots of info thank you!!!
     
  2. toolongtotell

    toolongtotell

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    He only said that it was "an anti-inflammatory that would be helpful."
     
  3. Learner1

    Learner1 Forum Support Assistant

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    NK cells were covered by my insurance.
     
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  4. toolongtotell

    toolongtotell

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    My insurance is a 80/20 plan so I need to cover 20% of whatever the cost is. For the other bloodwork it came to $2000 for ten vials of blood.
     
  5. SunMoonsStars

    SunMoonsStars Senior Member

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    Arava
    “Teriflunomide also has antiviral effects against numerous viruses including CMV, HSV1 and the BK virus, which it achieves by inhibiting viral replication by interfering with nucleocapsid tegumentation and hence virion assembly.[19]
     
    Last edited: Feb 24, 2018
  6. cb2

    cb2 Senior Member

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    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.
     
  7. EsetIsadore

    EsetIsadore

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    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?
     
  8. theduckopera

    theduckopera

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    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?
     
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  9. cb2

    cb2 Senior Member

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    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."
     
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I looked for a reference to this and found it/one here: https://albertarheumatology.com/leflunomide/
     
  11. el_squared

    el_squared Senior Member

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    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...
     
  12. cb2

    cb2 Senior Member

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    Sancar and ljimbo423 like this.
  13. cb2

    cb2 Senior Member

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