Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Looking for diagnosis, frustrated

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Sam123, Nov 10, 2017.

  1. Sam123

    Sam123

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    Im 40 years old man. Im suffering from strange symptoms since 2 months. My symptoms are: dizziness, nausea, unsteadiness, extreme weakness and fatigue. I have difficulty tolerate walking outside. Just few minutes and then I feel like I will fall and my head gets heavy and I feel nauseous and fear. I made echo two times and the results were normal. All other tests: CBC, sugar, minerals, etc. All of them were normal except slight deficiency in vit D. I suspect that I have POTS but here in Yemen the doctors are not aware of this disease.

    Actually, my symptoms first happened to me when I was 30 years old but disappeared in a month. After that, they happen every two years, take a month and disappear. Meanwhile, I have slight dizziness when Im teaching in the classroom or in meeting, etc, but never bothered me from doing my work. . One doctor gave me propronalol in 2009 because he noticed high HR . So, Im used to take a 10 mg propanalol when necessary. May be 10 tablets a month. But, nowadays it seems that the symptoms are more severe. This complicated the problem. But the difference in HR rarely exceed 30 beats and when I take propanalol, the maximum is 80 sitting to 100 standing with 20 beats difference.

    I've been having a hard time getting a diagnosis so I just wanted to run some of my symptoms to you all to see if this could actually be a POTS or other disease. I did a laying/standing test at home and I'm really curious what everyone thinks about my numbers. Do these look like POTS? I dont take any medications, but there are mild to moderate symptoms as shown below.

    8-11-2017 (8 AM) - Mild Symptoms

    Laying down:100/7075

    Standing:

    1 min.100/7093

    2 min.91/6588

    3 min.94/7689

    5 min.97/7394

    8min.97/7294

    10 min.95/7492



    9-11-2017 (10 AM) Mild Symptms

    Laying down:105/6286

    Standing:

    1 min.97/72106

    3 min.96/70102

    5 min.103/74101

    7 min.93/71102

    10 min.90/71108





    10-11-2017 (8 AM, while in Bed) - Moderate Symptoms

    Laying down:111/7085

    Standing:

    1 min.112/101117

    2 min.130/108113

    3 min.103/74115

    5 min.93/71107

    6 min.90/71116


    9-11-2017 (10 AM) Moderate SYmptoms

    Laying down:102/7090

    Standing

    1 min.102/67120

    2 min.98/70115

    5 min.98/73117

    7 min.99/72117

    10 min.99/71120
     
    Last edited by a moderator: Nov 12, 2017
    ivorin likes this.
  2. Learner1

    Learner1 Professional Patient

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    Pacific Northwest
    Have you been tested for infections? Many of us have chronic herpes family viral infections and autoimmune antibodies caused by them.

    You could ask to be tested for Epstein Barr, HHV6, cytomegalovirus, zoster, and HSV1 and 2. Or other viruses common to where you live. Or bacterial infections, like atypical pneumonias. Or DNA stool tests for parasites, candida, or microbiome imbalances.

    Several of us with the symptoms you describe have had a test done in Germany for weird antibodies linked to ME/CFS, some of which can cause POTS:

    http://www.celltrend.de/cfs-diagnostics.html

    If we're lucky, our doctors have run tests for immune system function, including immunoglobulins, NK cells, and T and B cell panels.

    Once these are identified, antivirals, antibiotics, probiotics, and immune system boosters and modulators can be prescribed to help.

    There are no perfect answers today. But if you can get a doctor to be curious, you may be able to find answers that may improve things.

    Best wishes...
     
  3. Sam123

    Sam123

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    @Learner1 Thanks for the information. I will try to find a good doctor, although Im not sure if the mentioned tests are availale here in Yemen.
     
  4. Learner1

    Learner1 Professional Patient

    Messages:
    1,388
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    2,388
    Pacific Northwest
    Sometimes you can have the blood drawn where you are, and have it sent to the lab in another country. For the German CellTrend test, my blood was drawn in California, where I paid for the blood draw and postage, and sent to Germany to the lab. They performed the test, then emailed me to do a web transfer to pay the bill, then sent me the results. I had another test done in the UK, and paid for that up front.

    If you go this route, make sure that whoever is drawing uour blood understands the correct protocol, time of day, spinning it in a centrifuge, temperature constraints for shipping, etc. Many of my tests are sent all over the US and only rarely is there a problem with the sample... maybe 1 out of 30-40 tests.

    Good luck!
     

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