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Dr. Pridgen's 9 different cocktail mix patents & research under Dr. Carol Duffy name

Discussion in 'Active Clinical Studies' started by lartista, Mar 25, 2014.

  1. SOC

    SOC Senior Member

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    (my bolding)
    I think that bears some explanation. Do you think other patients are housebound or bedbound because they do "allow" themselves to stoop that low? As if it's a matter of choice and/or behavior? o_O
     
    Last edited: Nov 11, 2014
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    (My bolding)

    uhhh?! :confused:

    That is definitely not possible for most here--this strategy is what put many of us into ME. :(

    Best,
    Sushi

    P.S. SOC and I posted simultaneously
     
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  3. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    @SOC @Sushi

    I better mount my guard.

    Not at all meant as a comparison to others.

    I was implying that if I do let myself lie down all day or become too depressed then it would be a spiral I wouldn't be able to get out of.

    Just highlighting my OWN struggle and how I deal with it...

    Anyway back to Pridgen, because believe it or not, this thread IS about the different drugs he has patented.

    You did not comment on the last part if my previous post:

    "As for CFS and FM. Considering this thread is about Pridgen, HSV infection according to him causes BOTh CFS and FM. So I am not the only one who believes they have the same pathogenesis."
     
    Sushi likes this.
  4. SOC

    SOC Senior Member

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    I didn't think I was required to respond to everything everyone posts. :rolleyes:

    Nevertheless, if you want the response I had decided to keep to myself, here it is --

    Pridgen is hardly an ME/CFS expert, so just because he thinks it's true doesn't make it so. He probably has the same limited knowledge of the illness most people have and is working from the old belief that FM and CFS are the same thing. My former GP thought the same thing, that doesn't make it true.

    ME/CFS experts, who are up on current knowledge don't believe they are the same. Related, maybe. The same, no.
     
    Iquitos and Valentijn like this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks for clarifying that you were commenting on your own struggle and strategy...

    Yes, he does think that, but he has not yet had ME patients in his trial...so we'll wait and see.

    Best,
    Sushi
     
    Valentijn likes this.
  6. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Phase II results set to be published likely next week will show results of patients (including 3-4 CFS patients) response to Pridgens drug combo.
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Do we know what criteria were used to diagnose the 3 - 4 CFS patients i.e., are they CF patients, CFS patients or ME patients?

    Sushi
     
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  8. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    You're not required to respond at all.

    But if you want to pick out bits of my posts which aren't related to the thread to criticize, then at least respond to other points I've made which are related to the thread.

    Your paragraph on Pridgen is ignorant, biased and without evident merit.

    All the ME/CFS 'experts' are nowhere nearer to cracking CFS than Pridgen. They each have theories without conclusive proof.

    'Limited knowledge' ??
    'Old belief' ??

    Where do you get this stuff from...

    I'm done commenting on this thread, your posts and Pridgen.

    I'll be back on here when phase II study is published.
     
  9. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    I am unsure if a criteria was used to diagnose patients. I'd like to know that too though, as it would increase validity of any findings.
     
  10. lartista

    lartista Senior Member

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    My vision is going double again from Uhthoff. Sushi is going to arrive and clean up my spacing as I can not see very good at all in this moment... and I could see who I was responding too and spelling errors I make.I suffrered optic neuritiusretobulbar, scotoma and uhthoff in my eyes and optic nerve.

    Klimas is not postivie what it is but wants a biopsy on my eyes ball to see which viruss may have entered my eyeball as well as what happened to my optic nerve.Bewteen all my heart issues and vision loss... maybe you can all see how much worse this illness can get.

    You me it is not joke to sit around and wait while I lose a new piece or two of me every year. Anything to block the viruses moving foreward is needed for me... Francesca
     
    Last edited by a moderator: Apr 6, 2014
    maryb likes this.
  11. Valentijn

    Valentijn Activity Level: 3

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    No, the reason you haven't been housebound or bedbound is not because you don't "allow" yourself to. It's because you've been lucky. I absolutely hate it when I'm bedbound, since it makes life awkward and more painful, yet if I try to fight it by sitting up longer, I just get sicker and sicker. I get better when I stop fighting and let myself rest.

    Star jumps (jumping jacks) do not help ME patients push past the fatigue. They make us sicker. If exertion makes you feel better, rather than worse, it is extremely unlikely that you have ME/CFS, and you really need to look for a different diagnosis. At the very least, you need to keep in mind that Post-Exertional Malaise is a central aspect of ME/CFS, and please respect that it is highly disabling for many of us.
     
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  12. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    It's difficult NOT to respond to this.

    Who with CFS can be deemed lucky?
    Just silly...

    I've never said exertion makes me feel better. Valentijn, to say it's 'extremely unlikely' another user has CFS and I 'need to look for a different diagnosis' is extremely ignorant. You should delete your post solely based on that comment.

    Yes I do FIGHT my symptoms.

    But do I feel better for doing so?
    Only in terms of hope.

    I am not housebound but I must sit when out. I'm not bedbound but lie down on the middle of the floor when at work due to exhaustion. Hold onto rails or a wall or anything to support myself from falling to the ground.

    Because I'm not housebound or bedbound does not mean I don't have CFS. I just try to fight it that's all.

    Anyway, I've decided to discontinue posting new threads except for replying to comments on my existing threads.

    Now I'm off until phase II is out.
     
  13. Valentijn

    Valentijn Activity Level: 3

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    Thank you for the explanation. Have you had orthostatic intolerance investigated or treated? It can cause many symptoms associated with ME/CFS, either on its own or as part of ME/CFS. If you do not have distinct episodes of PEM, treating OI might be your entire cure.

    And regarding "fighting" your symptoms: that is not an admirable trait. If you have ME/CFS, fighting your symptoms with physical activity will make you sicker. I also think it's rather disturbing and inappropriate for you to express pride in engaging what sounds like a self-harming behavior for an ME/CFS patient. Fighting the disease with activity will make you sicker, whereas acceptance and adaption can give your body a shot at recovery, or at least less pain and other symptoms.

    Please try to think of how it makes other people feel when you talk about fighting symptoms in a way which is very harmful to most of us, especially when in the context of a disease where we are often blamed for not exercising our way out of it. It feels like you're saying that exercising is somehow helpful for you, and the implication is that as an ME/CFS patient it should be helpful for us too to if we'd just stop giving up and start fighting.

    I'm hoping you don't actually believe that exercise is any way helpful for us, and I really hope that you can reconsider your war against yourself. This is not an attack on you in any way, but rather a rejection of certain statements which have very harmful and upsetting implications.
     
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  14. maryb

    maryb iherb code TAK122

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    This is very interesting to me as I have terrible vision problems since getting ME. I'd never heard of Uthoff either, this would contra -indicate infra red saunas which I've been advised to do by several doctors.
    Please keep us informed about how you get on with Dr Klimas - we can all learn from what the top docs are doing, (even if we can't access it here in the UK) I never knew a virus could get into the eyeball - damn them.
     
  15. xrayspex

    xrayspex Senior Member

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    I havent read all of the replies but am struck about meloxicam and valtrex---i have both available to me and when i do take them i always suffer for it so only pulse them infrequently when i want to prevent something possibly unattractive happening if you know what i mean-----it always messes me up and i get awful backlash of pain from both. with the v i figured it could be like a herx and also maybe its hard for me to detox it and the m i thought i couldnt break it down easily cus sometimes my kidneys hurt the next day---but they both cause a burning pain sometimes all down my spine and even in my teeth. anyone get that? I cant imagine how anyone takes them daily---its like the pain i heard about with hep c treatment and interferon for me i feel.
     
  16. SOC

    SOC Senior Member

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    Pulsing Valtrex can result in you developing an antiviral resistant form. Not a good idea for you or anyone exposed to you.
     
  17. xrayspex

    xrayspex Senior Member

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    thanks soc--i know--knock on wood, nothing crazy happen so far and been doing this since like 2008--but that debate aside--what do you think of the horrible pain i get from it?
     
  18. SOC

    SOC Senior Member

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    Kidney pain is not a good sign. Usually means you can't tolerate the med. Also, you can get kidney stones from Valtrex if you don't drink enough fluids. Could it be that?
     
    Last edited: Apr 7, 2014
    xrayspex likes this.
  19. liquid sky

    liquid sky Senior Member

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    I get horrible spinal pain when I tried to treat with antibiotics for Lyme Disease. Unbearable pain, would have to stop.
     
  20. xrayspex

    xrayspex Senior Member

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    could be soc, fortunately no kidney stones yet, maybe cus i always stop anything at first sign of problem thse days...learned hard way to do that when got gallstone from mix of erythomyocin and prozac at onset of cfs/fms
     

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