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Finally, success with a local doctor!

Discussion in 'ME/CFS Doctors' started by SOC, Feb 25, 2013.

  1. SOC

    SOC Moderator and Senior Member

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    What's DD? o_O

    Sounds like your Dr is great. My closest ME/CFS Dr was 6 hrs away. Now I'm a plan flight away. Still, it's worth it to have a good specialist.
  2. Creekee

    Creekee Senior Member

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    @San Diego,

    Sorry! Protomyxzoa rheumatica. Dr. Stephen Fry's cootie discovery.

    Creekee
  3. SanDiego#1

    SanDiego#1 SanDiego#1

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    Soc- Diostolic Dysfunction of the Heart. Means I am not getting enough Blood Volume through my heart or body.The Diostolic part of my heart is not able to push the blood back out properly
    My Physician specializes in it. A lot of ME/CFIDS patients have it and it does not go away. You have to build up your Immune system so you can handle it. I am doing better. He has told me things to do and to take they are all natural. Rarely rec meds. Also none of the other Cardiologists caught it. Even when I had a Heart Cath done..

    I agree about the distance to see a good CFID Dr.
    I can drive or have someone else drive me. He is in the next state.

    San Diego
  4. SanDiego#1

    SanDiego#1 SanDiego#1

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    Creekee- Is it a Parasite?

    San Diego
  5. Tristen

    Tristen Senior Member

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    No, DI could not be responsible for the entire array of me/cfs symptoms, but hopefully treating the condition will give you some relief. I appreciate you keeping us posted on how well this is working for you. Also, thanks for the suggestion to be tested (or maybe re-tested, can't remember what we did back then).....I'll ask my doc.

    Some years ago, Dr Paul Cheney did a write up on his experience with me/cfs being a disease that evolves in phases. It matched my experience of going from immune to neuro. I believe that info was posted on the Dallas Fort Worth site. I'll look around for it.

    Best

    T
  6. Tristen

    Tristen Senior Member

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    Over the years I have heard this same experience reported by many with me/cfs. I think it is quite common for those of us who go on for many years. When my condition switched over to all neuro, the immune symptoms stopped. Lab tests still show a perturbed immune system, but without those symptoms.

    PR = protomyxzoa rheumatica? No I don't recall ever being tested for that. I'll have to research it.

    Thanks

    T
  7. SanDiego#1

    SanDiego#1 SanDiego#1

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    Tristen- Dr. Cheney is my Physician. Hope to scope out what is going on with PC with him tomorrow. If you want to contact me by Conversations after that I will go over what we decided.. Had great day yesterday. Today severe OI symptoms.This Disease (Or what ever it is is Bizarre).

    Thank you for your interest. If you see article he wrote let me know.

    San Diego
  8. Creekee

    Creekee Senior Member

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    Would love to see Dr. Cheney's info on the phases of the disease. Next month will be 33 years for me, so my biggest shift in symptoms started around the 31 year mark. Gotta say, it's really weird to wake up without a sore throat and golf ball glands after all these years. Am also a real hardbody after sudden 45lb weight drop (who IS this woman??).

    Here is some info on protomyxzoa rheumatica:

    Interview with Dr. Stephen Fry (discovered this protozoa):
    http://protomyxzoa.org/images/Protomyxzoa_interview.pdf



    A presentation by Dr. Ann Corson who has been treating patients with the protozoa:
    http://protomyxzoa.org/images/Protomyxzoa_rheumatica.pdf


    Best,
    Creekee
  9. Tristen

    Tristen Senior Member

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    Northern Ca. USA
  10. SanDiego#1

    SanDiego#1 SanDiego#1

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    Creekee- Alot of his info is on the Cheney Clinic website. The patients who have had it the longest. Usually go into
    Low blood Volume mode and DD-which is what I have.I now have been diagnosed with Diabetes Insipidus. Had severe problem with Desmopressin-which was drug of choice. Could not take even in small dose. Don't know what is next .The problem with DI is dehydration.

    San Diego
    San Diego .

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