In Full Remission

Discussion in 'General' started by Hustler, Jul 1, 2017.

  1. Farmgirl

    Farmgirl Well-Known Member

    @Merida. Hi! . I wanted to thank you for the info about Lyme's and the Vector conference. Last year, not knowing much about Lyme's, my husband got the "Under our Skin" movies. Then with your advice, I have been investigating. Long story short, I am on a Doxycyline challenge now to draw out the bugs and in 2 months, will get tested through Igenex. Found a great doctor. I am very ill from the Doxycycline now...you have any advice for me...or anyone else that has Lyme's with confections?

    I must admit it us all so very confusing! I try to read Dr. Horowitz' book, but it is way too overwhelming in my bad state.

    Hope you are okay?? Take care!
     
  2. Issie

    Issie Well-Known Member

    Sadly, have not seen Unrest. Would love to.

    My story keeps getting more complex. I don't have mold in my house. But my internal markers show active exposure. All I can figure is its internal (was also found in a thyroid biopsy). The doc who once thoight it was a protozoa (now a mold in a biofilm), says we have a genetic defect and are missing a protein. I'm doing lots of cleanses.

    We are also treating Lyme and Babesia. Interesting you mention a virus like AIDS. My naturopath doc puts us on Alinia as the first thing. Some AIDS patients use it. And it's also for giardia. (Which has been associated with CFS.)

    Sorry you have had a lifetime of this and you passed it to your kids. But despite me having been handed bad genetics - I'm thankful to be alive and to have experienced what I have in life. I'm glad to have been born - even with the issues. I'm sure your kids feel the same. My sister passed it to her kids too.

    Issie
     
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  3. Issie

    Issie Well-Known Member

    Forgot to comment on MARCONS. It's a antibiotic resistant staph. It is usually in the sinus but can be throughout body. One of the 7 resistant antibiotics was Doxycyclone. No wonder it did nothing for me. I took it for years off and on and it did very little. Initially, it helped. But now it might as well be water.

    Issie
     
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  4. Merida

    Merida Well-Known Member

    Sorry I am so late responding. Just no extra energy to chat. I am investigating the BP and diastolic dysfunction more this week - with the cardiologist. Have you been diagnosed with POTS? Do you have Ehlers Danlos?

    My BP is all over the place- was 160/ 120 in doctor's office. Then I lay down on my right side,nand it dropped 30 points. It is higher in the am - 140s or so/ 90. It goes up when I stand. It is often normal in the evening.
    I am wondering if it is related to high intracranial pressure - which I probably have. Is this a common finding in retroviral patients - high intracranial pressure? Dysautonomia? Blood pressure issues?
     
    Last edited: Oct 16, 2017
  5. Farmgirl

    Farmgirl Well-Known Member

    @Hustler. Did you have a lot of physical issues(new ones) when you started the treatments? I heard sometimes the ARVs unleash hidden infections at the start of therapy. I am getting my immune marker test results back soon. I am a lot worse on AVs and ABs, but hoping to improve. I have 4 active viral infections ...been sick at least 30+ years, and now bacterial. Feel like I am dying slowly.
     
  6. Farmgirl

    Farmgirl Well-Known Member

    What you said at the end there us great. I am also glad to be alive and thankful for all I have!
     
  7. Farmgirl

    Farmgirl Well-Known Member

    @Merida I read somewhere the other day about high IC pressure related to this disease. Can't remember where it was. I was looking for a friend who has it bad...headaches w/vomiting and needs to have some fluid drained regularly to cope with it. My issue with BP has always been low and I often feel I am about to pass out, but don't. Do you have both low and high BP? That diastolic of 120 for you is not good. My heart rate is all over the place, too.

    Hope your cardiologist visit went well ...I go this week, too! (I think I have viral myocarditis)...anyways...

    I do not have ED...do you?
    I ended up looking into it because my hips "go out" ...a lot. They go out and I cannot walk for a bit. Usually it is a response to something I did a day before like sitting too long in a funny position or stretching.

    The weather here has been divine lately! Cool and crisp. Enjoying it as the heat is gone.

    We got off topic, but will you ask for ARV's ?? I already asked...we are waiting for my immune tests to come back. Nancy Klimas says ARV's are hard on the patient at first.

    Next thing on my list while stuck in bed us to learn Chinese so I can watch that new video Hustler posted recently! . At least I can do something productive with my life....for once!
     
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  8. Vaporization

    Vaporization Active Member

    Damn you're ambitious. ;)

    This will get you started.
     
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  9. Not dead yet!

    Not dead yet! Well-Known Member

    LOL I like to learn languages too. darn, should've mentioned that in another thread. It does pass the time.
     
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  10. Franz72

    Franz72 New Member

    Hi Hustler, thank you for your information.
    My wife has ME/CFS since 4 years. She started basically the same experimental therapy, just two months ago.
    After 15 days on Tenofovir/Viread she started noticing interesting changes (able to sleep night, instead of day; and more).
    When did your remission start?
    Did you know that cistus incanus has the same property of Raltegravir? Researchers in Munich found it out recently.
    Br
    Francesco
    from Austria
     
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  11. Farmgirl

    Farmgirl Well-Known Member

    @Franz72,
    Welcome to these boards as a caretaker. I can't speak for all of us, but as a PWME I say so many of would be lost without the wonderful friends and family who daily meet needs we cannot. Bless you!

    Hope the treatment "takes"!
    Let us know with an update, please, it may give us all something to consider or reconsider.

    I have been in Gratz, Austria. Truly lovely place. Farmgirl
     
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  12. Farmgirl

    Farmgirl Well-Known Member

    @Vaporization
    Now that I have mastered Chinese, I am starting on Hungarian. With 17 case endings, should be a good challenge and I will never be bored!!
     
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  13. Zapped

    Zapped Well-Known Member

    Great! I had an opposite reaction - more sick, ‘had to quit > 30 days.
     
  14. Franz72

    Franz72 New Member

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  15. Not dead yet!

    Not dead yet! Well-Known Member

    Gratulálok! Coolest language on earth!​
     
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  16. Farmgirl

    Farmgirl Well-Known Member

    You been to Budapešt???
    I love it there! Fortunately, the Hungarian are very educated people and many of them speak English. Of course I that was many years ago when I could travel. Can't travel worth beans now.
     
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