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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
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Might go to Dr. Klimas' office

Discussion in 'ME/CFS Doctors' started by madietodd, Apr 16, 2012.

  1. Marg

    Marg Senior Member

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    When she started taking about it she said it was the least toxic and cheap and she liked it. I had some GI issues at first but thye have passed. I am feeling quite good, I am to take it for a yeat. I went to 4 on the Equilibrant still at only 2 on the Imunivor.

    I am waiiting for the products for an herbal parasite and bacteria killing the small intestine. I have no idea how long I have had it or where I got it. One has arrived so the orthers hsould be along soon. I am anxious to get started. Has anyone done that..
     
  2. Marg

    Marg Senior Member

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    Oh forgot to add the virsus EVB Cocsackie and HHV6. They had improved at the last testing but still some activation so Acyclovir was added.
     
  3. madietodd

    madietodd Senior Member

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    So, remember that NK "diet"? That's anti-oxidants? Dr. Rey told me that if it didn't help my sleep within 6 weeks, I'd have to have a sleep study.

    I only remember waking up once last night, instead of my normal 4 times. And by normal, I mean that every night I wake up at least 4 times.

    It was my second night on full doses of everything, and the first night where I took most of the fish oil at bedtime instead of in the morning.

    Fingers crossed!
     
    merylg and November Girl like this.
  4. SOC

    SOC Senior Member

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    It makes a difference what time of day we take fish oil? I've always spread mine out over the day. o_O
     
  5. madietodd

    madietodd Senior Member

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    I don't know. It just seemed that I was sleeping better when I took some at night, so I upped it last night. I had always taken it in the morning.
     
    L'engle and SOC like this.
  6. madietodd

    madietodd Senior Member

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    I just had my follow-up phone call with Dr. Rey. Guess who has Lyme? Yes, I was tested years ago, so either that was a false negative, or this is new-ish.

    It was a lot to take in, and I didn't have the test results, but I think she said I had chronic and acute lyme. For sure she said I have only 2 bands, and given my total immune picture she's just treating me with with doxycycline for 6 months. Yes, I'll be taking probiotics (and getting liver and kidney tests monthly).

    Lots of stuff is normal, which is wonderful to know. Thyroid, cortisol, the hepatitises, coxsackie....all no problem.

    I have mild parvo, epstein barr, and roseola (HHV-6) activation. She's hopeful that with lyme treated, my immune system will be able to control these.

    My natural killer cell count is normal, but they're not doing anything. Like a big army just hanging out. She's waiting on one test relating to this, but again, she's not going to add any other treatment until the lyme is under control.

    My vitamin D has dropped from 50 a few months ago to 35 now, despite a year of supplementing. She wants to see it between 50 and 70, so I'm adding 2,000 units in liquid form to my current pill.

    I have to get a neuro sleep test here.

    I won't have any news until I go back down to Florida in 6 months to get all of the immune tests redone........unless of course I start feeling fabulous from the antibiotic!
     
    heapsreal likes this.
  7. SOC

    SOC Senior Member

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    Interesting. I only had 2 bands when I was tested several years ago, but I was told that was not a positive result -- that more bands were needed. I don't think Dr R ran a Lyme test for me when she did my first set of tests this year, though.

    Congratulations o_O on turning up another bug to treat! My feeling is that the more infections we clear out, the better we'll feel, even if it doesn't cure the root illness. Good luck!
     
    lnester7 likes this.
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Here's Hoping!
     
    SOC likes this.
  9. madietodd

    madietodd Senior Member

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    SOC, I wonder if it depends on the lyme test used. My earlier test was negative because I didn't have enough bands. I'll compare the tests when I get my hard copy.
     
  10. lnester7

    lnester7 Seven

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    Sorry to here about lyme. I know this lady dealing with it and is bad stuff! Good luck and happy you found it to treat it!
     
  11. madietodd

    madietodd Senior Member

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  12. November Girl

    November Girl Senior Member

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    Sally, how long have you had this model? We looked at it today, and I like it a lot, but the online reviews are pretty bad.


     
  13. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I think we bought it last Jan. I don't remember seeing a bad review. I have read many on Spin Life etc. Spin Life has hundreds. A lady we talked to at a doctor's office LOVED hers so we bought it. The lady at the store for scooters said it is the best selling one. We have never had a problem. I just wish I had it two years earlier when I needed it more and we used my w.chairs. W.chairs are awful when shopping. This is perfect and small for isles at stores like Bed, Bath and Beyond, etc.

    If we ever do have a problem, we can just take it to the store to be fixed or whatever. They work on them there. Great place.

    We never had to do anything. It was all put together and ready to go for us.
     
    November Girl likes this.
  14. Tammy

    Tammy Senior Member

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    Sally, How do you transport the scooter? Do you have to take it apart......or do you have a lift on your vehicle?
     
  15. November Girl

    November Girl Senior Member

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    thanks Sally - I'll go take a look at spin life
     
  16. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Tammy, we take it in our SUV. It can be taken down to five pieces I think. I forget. Hubby takes it out and puts it in the car. He also charges it up, ha. I just drive it.
     
    Valentijn likes this.
  17. Tammy

    Tammy Senior Member

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    I would love to have a scooter...............but don't have the manpower to break it down.......load it ............unload and put together again! I will have to look into how much it would cost to get a lift on the back of my mini truck.
     
  18. November Girl

    November Girl Senior Member

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    Tammy, I'm seriously considering the Travel Scoot for just that reason. The battery is easily removed, and then the scooter itself is 29 pounds. It can be broken down further as well if that is to heavy. It's very expensive, but you don't need a lift, and it's easy for airline travel, or stashing in someone else's car.

    http://www.usatechguide.org/itemreview.php?itemid=1420

     
  19. SanDiego#1

    SanDiego#1 SanDiego#1

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    Hi I am fairly new to site. I have had CMV ,EBV. Possible Pots for 20 years. Went to see CFIDS Physician Dr. Cheney, in Asheville NC in the last year. Was Diagnosed with Severe Diastolic Dysfunction. Have already had Heart Cath and every other test done but Echo before I went to see him. Has anyone else been to Dr. Cheney in the last year? Since he is using his Echo machine?I live in the SE.
     
  20. SanDiego#1

    SanDiego#1 SanDiego#1

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    My Physician told me to always get Brand name as it had been tested and used for 10 years before Generic can come out. He said they have 30% margin of error or to change some of the ingreadiants and some come from out of the country. I ALWAYS try to get Brand. I don't need to be any SICKER.I have definitely had reactions to alot of Generic drugs.
     

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