Dr. Cheney's Protocol---Help Finding Detailed Info?

Discussion in 'Fibromyalgia Main Forum' started by zenouchy, Jun 25, 2012.

  1. zenouchy

    zenouchy Member

    Hi All,

    Does anyone know the best place(s) to find in-depth information on Dr. Cheney's protocol that I can share with my doctors? All I can find are some small articles on pro- health that only contain small snippets of info., and I did not find anything on a web-search. Thank you very much for your help!


    [This Message was Edited on 06/25/2012]
  2. sarahcatherine

    sarahcatherine New Member

    I see Dr. Lapp, who worked with Dr. Cheney before he passed away. His website, http://drlapp.com/ , is full of great advice!
  3. zenouchy

    zenouchy Member

    Thank you Sarah for responding. That looks like a great website. I did a search in Dr. Lapp's website for Dr. Cheney's protocol, but I don't see anything. Do you know where in the website it might be located? I really appreciate your help.


  4. zenouchy

    zenouchy Member

    You are such a wonderfully, supportive person! I hope you have had a good day today.

    I haven't seen Mikie on the board today, and I just saw the national weather report and am wondering if she is being affected by Tropical Storm Debby. I hope she's safe. Yes, I hope she has some info. though. :)

    Anyway, thank you so much for your support! I talked to my neurology nurse today about Klonopin for bright light sensitivity and gave him a brief run-down on Cheney's view of it (to the best of my knowledge), and he's going to even look up more info for me online because I get nauseas when I stay online too long from the bright lights. What an awesome nurse! I'm so happy this doctor's office is open-minded enough to listen to other ideas. I'm a bit nervous about what their "final answer" will be, it's a good start anyway. What a long road this has been. I don't know if I'm having "hybrid migraines" (they can't be classified as any other kind, which is weird enough) or what the heck it is....it's all so convoluted (isn't it always??).

    Hope you are feeling good!


  5. spacee

    spacee Member

    I saw him back in 1991 and was a phone patient for several years after that.

    Zen, are you looking for Dr. Cheney's latest, cause you might have to "join"
    his website and pay the money for a 3 month subscription to get the latest.

    I will have to say that I did that a couple of years ago. Tried the malaria
    med (no rx needed) didn't have a good reaction. Now, I have read here
    that he, Enlander and KDL in Belgium like the GC MAF (?) probiotic but
    it isn't recommended for ppl who have autoimmune illness which I am
    now positive for sjogrens.

    Once you join, you can print it all out but it is tons of his opinions from
    diet, supplements ,etc.

    Hugs to you Zen, I still find it so weird that we both have to have doc
    appts in the dark. Who would have thought??


  6. spacee

    spacee Member

    Looks like they are both still living!

    Good to know :)

    [This Message was Edited on 06/26/2012]
  7. zenouchy

    zenouchy Member

    I read somewhere on the 'net that Cheney passed away in 2004. Who knows whether or not that's accurate. I hope that he's alive and well.

    Thank you very much again for all of your help and information. It is much appreciated. My neurologist has given me the green-light to try the Klonopin, which is wonderful. I need to check with another doctor to see if it is compatible with my other medicines, and hopefully it will be.

    Yes, that is weird we are both having to have doc appts in the dark. I joked that I was a vampire. It is comforting to know I'm not alone in this challenge, but I wish no one had to go through it.

    How long have you been taking the Klonopin? Is it helping you at all? I sure hope you get some relief.

    Soft hugs,

  8. spacee

    spacee Member

    Dr. Cheney is most def. alive and well. I can see how someone may have
    thought he had died. He closed his office in 2002 (I think) and had to have
    a heart transplant! But he has an office open in Asheville, NC.

    I have taken clonazapam (generic Klonopin) for an amazing 25 years without
    increasing the amount I take. In fact decreasing it. Started a 1.5 mg at bedtime
    and later gradually lowered it to 1mg cause I felt it was making me too
    sleepy during the day.

    I have an appt on Thurs to ask my doc to order the Klon as Cheney does in
    .5 mg tabs (3 per day) so that I have some to take for the light sensitivity
    during the day. Cheney says to take part of a .5 as needed.

    I have already been trying it. I have to work with it so I don't take too much
    and have to take a nap.

    I did just make it throughout my son's wedding without sunglasses!! Which
    would have, of course, been unable without the daytime Klon (or Clon).

    In general, I live a very quiet life, in a home in which we keep the blinds closed. I am able to go to yoga 3 times a week which is in a darkened room :) Still wear my sunglasses though to the class.

    The fluorescent lives are worse than daylight to me...think they are to you too.

    Oh, and you might want to have an ANA lab test done. It will show if you are
    positive for sjogren's. Which I am now. It causes dry eyes and sensitivity.
    Dr. Lipkin has said that he thinks that CFS starts with a virus and goes to autoimmune. Which he would hurry up and announce whatever he has found

    Soft hugs to you too!!


  9. Mikie

    Mikie Moderator

    And do a search to see whether I can find Dr. Cheney's article on Special K. It's not so much a protocol as his recommendation that it stops brain damage in PWC.

    Love, Mikie

    Couldn't find it with a search in the Library here but found it using Google. Go to www.Prohealth.com/library/showarticle.CFM?libid=8021
    [This Message was Edited on 06/27/2012]
  10. JazzieS

    JazzieS New Member

    Hey everyone,

    Long time no see!!! Been away since my attention spam got worse and not enough stamina to keep up with all the posts here. Hope everyone I know here have improved and doing A-ok.

    Dr. Cheney used to give lectures at DFW CFIDS Support Group (out in Dallas/FortWorth area in TX)..they compiled loads important information of Dr. C's theories...though I have visited their site for many years.

    I take 0.25mg for bedtime since '98...recently, my doc recommanded an extra dose of 0.25mg during the day (see if this could bring my blood pressure down, long story, won't bore you guys with it). Anyhow, I take 'no klonopin day from time to time, so I won't become addictive to it.

    It is the only med. that gives me sleep at night.

    in friendship,
  11. zenouchy

    zenouchy Member

    Mikie, in case you didn't see the other post, thank you so much for the link! It was very helpful because I didn't find it in my search. I wonder what Special K stands for?

    Jazzie, thank you for your response and sharing your experiences with Klonopin. I'm glad it helps you sleep at night. Love your screen name? Are you a jazz music fan? I totally understand the lack of attention span. Mine varies a lot depending on how well I sleep the night before as well as how bad my bright light sensitivity is. Again, so nice of you to post and glad to see you here.

    Hugs to all,

  12. zenouchy

    zenouchy Member

    Thank you so much for the extra info. So glad that Dr. Cheney is alive and well after his heart transplant.

    So, you take the generic Klonopin? That's good to know. I read on the link that Mikie provided that Cheney recommends the name brand, which is a lot pricier for me. I may try the generic Klon. first and see how that works out (assuming my doc will let me try it); I'm guessing she will.

    How wonderful that you were able to go to your son's wedding without wearing sunglasses! I'm happy for you that the medicine is working at least somewhat for you and hope that you get the dosages tweaked even more.

    Interestingly, I have never been officially diagnosed with CFS. I had my ANAs checked 8 years ago and got diagnosed with fibromyalgia. It was confirmed by three doctors (a rheumy, a pain mgmt specialist and an internal medicine doctor). The ANAs were slightly elevated at that time, and the doctor I saw said that this is was what they typically see with fibro patients. A few specialists, however that I've seen over the years (and there have been too many!) think that CFS and fibro are one and the same though.

    I am confused now by the light sensitivity (and YES, definitely the fluorescent lights are the worst, and then tv lights/electronic lights). I thought fibro patients can get the bright light sensitivity too?? IE, I don't THINK this means I have CFS now? I also have other eye issues, but not Sjorgens (I do have other eye issues though). It's confusing! :) I'll ask my opthamologist about it the next time I see him to make sure, and I may also see about getting my ANAs checked again. Wouldn't hurt. Thank you so much again for all of your help. I really appreciate it!

    Yes, I hope Dr. Lipkin makes an announcement soon. Anything to advance research on CFS is very much needed.

    Feel good and soft hugs,

  13. JazzieS

    JazzieS New Member

    Yes, I AM A JAZZ FAN, althought I mostly enjoy listening to Smooth Jazz now a days....it has the beat, but not noisy.

    The worst ME/CFS is, the worse my attention span..often have to explain to people on the other end of the phone to slow down, so my brain can process what the person is saying. Funny how our brain works, huh?

    Good day.


  14. Mikie

    Mikie Moderator

    Some people can become psychologically addicted to most anything but the risk of becoming addicted to Klonopin (Special K :) is very low. One usually does, however, experience physical dependence on it. That means withdrawal symptoms if one doesn't wean off of it VERY slowly. It does nothing for my BP. There are better drugs for that. I do put about 1/4 of a 1 mg. tablet under my tongue anytime I experience sensory overload, such as harsh lighting or sound in a store or restaurant.

    I always extol the benefits I have had from my Special K but I also want to be sure people are aware of the side effects.

    Love, Mikie