1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Article: Lannie at the Pacific Fatigue Lab: the Repeat Exercise Testing Pt II: the Te

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 16, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,013
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Great stuff Lannie. Fascinating to see how much they look at. I did the nasal acoustic rhinometry test with Dr. Baraniuk. If I remember correctly it was measuring sympathetic nervous system functioning and how the capillaries (passages?) in the nose expand (?). It must have taken him 15 minutes to do the test. He indicated that CFS patients noses were constricting and opening at the wrong time! His study should be out soon.

    In a recent study from Vermoulen there was some indication that during ventilation not enough CO2 might not be passing from the blood cells to the lungs on the outbreath
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Air exchange is so important because that is how oxygen gets to the blood - and then into the tissues - and then into the mitochondria where it powers aerobic functioning. Any step in the process could impact the aerobic to work aerobically.

    That was amazing to hear how your oxygen saturation levels used to drop when you walked up the stairs and is better now. Do you think this is because you are managing your POTS better?

    I had the same experience on the bike- all of sudden my legs gave out - there was nothing left.

    Love the pictures by the way :thumbsup:
  4. anncavan

    anncavan

    Messages:
    98
    Likes:
    5
    San Francisco, CA
    Thanks Cort! It sounds like you know more about the Nasal Acoustic Rhinometry test than I do. :) I remember Staci discussing what you said about the capillaries expanding. They do the test before exercise for the base line. Then in theory, the exercise will have the blood flowing and expand the capillaries. They should see that in the results. I'm not sure of the results, however, as it was not one of the few things we covered in our day two summary... Hopefully the full report will have more detail to share with you.

    Regarding the oxygen saturation levels, the only things I can attribute to assisting my POTS are my meds. I'm on fludrocortisone to increase my blood pressure (once on the correct dose I had a much easier time standing up or turning my head without dizziness), atenolol to minimize the aggression of heart palpitations and desmopressin (water retention).

    I'd like to make a quick note on desmopressin. From what I understand it's very new to the POTS world. It's traditionally used for children who wet the bed. They take it before sleep, and it helps the body retain water during the nights sleep. I take it twice a day, and it has helped keep my blood volume up. Side note, it has not stopped me from having to use the restroom. Where I noticed it's immediate help was in high altitutues, where I've traditionally had a very hard time. But about a month after on desmopressin (when I had more energy earlier this summer) I went to Salt Lake City to visit a friend for 5 days. We were in altitudes consistently between 5k-12k, and I had no problem.
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    We are going to hear more about desmopressin I promise you. It is a vital part of CBS's protocol. I tried a tablet of Desmo once when I was in my urinate every 15 minutes mode and I felt calmer and warmer actually quite quickly. CBS and I have been talking about it lately - how interesting that it just popped up here as a blood volume enhancer - and thus, I suppose as a POTS medication. :thumbsup:
  6. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    Hi Anncavan,
    What kind of doctor gave you demopressin? Are you able to blood tests more easily? thanks.
  7. sensing progress

    sensing progress Senior Member

    Messages:
    296
    Likes:
    9
    Tucson, AZ
    Yes, I want to hear more about desmopressin too! Cort, I also have times of having to urinate every 15 minutes.
  8. anncavan

    anncavan

    Messages:
    98
    Likes:
    5
    San Francisco, CA
    It was my Lyme doc. He had heard about its success from another doc, so we tried it. I love it. I don't feel bloated or like I'm caring retaining water. I think it simply keeps me more normal. Granted my POTS symptoms aren't completely gone, but with these meds (fludrocordisone, atenolol and desmopressin) a pair of spanks and compassion socks, I can survive sitting at a dinner table, or in a seat to see a show. Being able to be upright for a few hours at a tome like that has given me some social life back!

    Re the bloodwork, hadn't really thought about it. My PICC line helps with draws. When they have to use a needle I still drink a ton beforehand.
  9. sensing progress

    sensing progress Senior Member

    Messages:
    296
    Likes:
    9
    Tucson, AZ
    hehe, "compassion socks" :thumbsup:
  10. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Have you had your ADH levels checked or pituitary functioning (is there a way to check that?)???

    I remember Annette Whittemore talking about drugs that are out there that might be helpful that physicians aren't thinking about. I wonder if Dr. Klimas or Dr. Cheney has thought of desmo for low blood volume. I just asked someone who is seeing Dr. Peterson..

    So spanking works? Never thought of that. I imagine it really does get the blood flowing......How many a day and how long does it last? :cool::cool::cool:

    And 'compassion socks' too....this is getting interesting... [​IMG][​IMG][​IMG]
  11. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Isn't that bizarre that you fainted (several times) on the exercycle before yet nothing showed up abnormal!!!! It reminds me of the time I did a Tilt Table test with my brother and felt horrible and afterwards (while he felt fine) and yet we were both 'normal'. :( I get the feeling they were missing something :oops::oops:

    I wonder if the the Pacific Fatigue Lab does a more extensive test. I wish they could monitor blood flow to the brain at the same time....I imagine that would be interesting.
  12. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    What precipated your case of ME/CFS, if you don't mind my asking - was there anything in particular?
  13. CBS

    CBS Senior Member

    Messages:
    1,364
    Likes:
    246
    Western US
    Deficiency in ADH

    Here are two articles (one study and one letter) that speak to abnormal ADH secretion and water metabolism in post-virall fatigue and CFS. There was a lot of interest in ADH and CFS back in the late 90's and then the topic was simply dropped. Why these have never received any real attention is beyond me.

    The second article talks about salt loading and fluid intake but why go that route if the real issue is a deficiency in ADH?

    Let me know if you'd like a copy. I have these in pdf.

    Abnormal arginine-vasopressin secretion and water metabolism in patients with postviral fatigue syndrome.

    Bakheit AM, Behan PO, Watson WS, Morton JJ.
    Department of Neurology, University of Glasgow, Scotland.

    Acta Neurol Scand. 1993 Mar;87(3):234-8.

    Abstract

    Water metabolism and the responses of the neurohypophysis to changes in plasma osmolality during the water loading and water deprivation tests were studied in nine patients with postviral fatigue syndrome (PVFS) and eight age and six-matched healthy control subjects. Secretion of arginine-vasopressin (AVP) was erratic in these patients as shown by lack of correlation between serum and urine osmolality and the corresponding plasma AVP levels. Patients with PVFS had significantly low baseline arginine-vasopressin levels when compared with healthy subjects. Patients with PVFS as a group also showed evidence of increased total body water content. These results may be indicative of hypothalamic dysfunction in patients with PVFS.


    Chronic fatigue disorders: an inappropriate response to arginine vasopressin?

    Peroutka SJ.
    Spectra Biomedical, Inc., Menlo Park, CA 94025, USA.


    Med Hypotheses. 1998 Jun;50(6):521-3.
    Abstract

    Chronic fatigue disorders are characterized by a subjectively defined group of symptoms such as chronic fatigue, mental confusion, exertional malaise, weight changes, and/or diffuse multi-joint pains. Significant clinical overlap exists between chronic fatigue disorders and the syndrome of serum inappropriate anti-diuretic hormone (SIADH). Both chronic fatigue disorders and SIADH are characterized by lethargy and mental confusion. Both disorders can be induced or exacerbated by viral illnesses, physical exertion, emotional stress and/or hypotension. Both can be treated with salt loading and glucocorticoids. Therefore, altered water metabolism resulting from inappropriate release and/or response to arginine vasopressin (AVP) is proposed as a pathophysiological basis of certain chronic fatigue disorders. Moreover, these data suggest that salt loading and/or direct inhibition of AVP may be an effective therapeutic approach in individuals with chronic fatigue disorders.
  14. anncavan

    anncavan

    Messages:
    98
    Likes:
    5
    San Francisco, CA
    OK, OK. I really need to use the spell check don't I? :)

    ComPRESSION socks and Spanx. Spanx, for you men out there that don't know the brand, is a sort of biker short for women to wear under clothes to "suck it all in and smooth it all out." It also happens to be quite helpful for those of us with bad circulation. For the ladies out there sick of having to wear pants with compression hose... I can wear a knee length skirt and boots, looking completely normal, while hiding a pair of knee high compression socks and my biker short style spanx.
  15. anncavan

    anncavan

    Messages:
    98
    Likes:
    5
    San Francisco, CA
    I had always suffered from quarterly bronchitis (age 12 on), had chickenpox twice, scarlett fever twice, cocksackie B in high school, the croup in college. But always managed to be an athlete, the leader of the social scene and a workaholic. In my late 20s I did a 3 year stint of grad school on top of a 50 hour work week and went straight into a 60+ hour work week that had me on the road. And I started training for marathons. ha! Late October 08 I ran 10+ miles, jumping into a race to help encourage a friend. But I hadn't trained for it. I saw my decline from that day on. By December I couldn't fly due to the change in altitutde and I slept non stop. By February I collapsed and was brought to the ER. And so it all began...
  16. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    507
    Los Angeles, CA
    This thread is getting better and better all the time! I think "compassion socks" deserves to be immortalized forever more.

    (For those unfamiliar with the concept of Spanx, Wanda Sykes in her "I'ma Be Me" TV special explains it all for you, as well as describing a Spanx failure that occurred when she was a guest on the Tonight Show. Tragically I can't find the relevant excerpt anywhere online, so you will all just have to rent the DVD, it's well worth it.)

    Many thanks for the detailed blog posts, anncavan. Like a lot of people I'm interested in the possibility of doing this testing myself, so it's great to get such a complete account. I can't believe that this little lab in Stockton is the *only place* that is doing this testing.
  17. Sasha

    Sasha Fine, thank you

    Messages:
    8,168
    Likes:
    7,064
    UK
    I'd rather have compassion socks any day than the horrible compression hose I tried for a while!
  18. Sasha

    Sasha Fine, thank you

    Messages:
    8,168
    Likes:
    7,064
    UK
    Hi Ann - my doctor advised me against wearing an abdominal corset (which was easy to get on) without compression hose (which weren't) because without the hose, the corset might block blood returning from the legs. I'm wondering whether wearing knee highs and shorts might have the same problem - you've got a bit of uncompressed leg in the middle!
  19. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Darn....Ignorance was bliss in this case....Here's to Spanx though :thumbsup::thumbsup:
  20. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Another amazing story...I am agog as always....Do you think POTS is at the heart of your condition? Do you think that started immediately?

See more popular forum discussions.

Share This Page