• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

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    Possible ME/CFS Subgroup -- Cardiac

    One day I posted this on 'the other forum,' intent on doing the same thing here. But I've been struggling. Since I didn't want to lose the potential value of the hyperlinks I created over there, I'm just going to post a link here and hope that a) that's okay, and that b) the link works...
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    Curious about grocery delivery

    Just something to be careful of: Some delivery programs not only charge you for the delivery, and not only expect that you give the driver a substantial tip, but also charge you (sometimes significantly) more for many/most items than the in-store price. This isn't generally understood and...
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    Blepharitis, Dry Eye, Corneal Abrasions................

    One of the absolute best things I've done to keep my "ocular surface" problems relatively at bay was keeping the indoor humidity pretty high. We have a whole-house humidifier on our furnace (maintaining about 40-45% RH) and I run a relatively small separate humidifier in the master bedroom, by...
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    Heart valves inssufficiency moderate & ventricular left/right hypertrophia

    This is maybe the best man in the world to help you ... and he is in Berlin: http://www.carsten-tschoepe.de/?lang=de&katID=2 I wish you the best of luck. I am in a similar situation but am in the US and cannot get to Dr. Tschope.
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    SSDI: Quit when STD runs out, or get fired?

    This. Absolutely, this.
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    Low urine volume

    You could ask your doctor to check a complete blood count plus electrolytes. But I drink more water in the first 20 minutes of being awake then you drink in an entire day. You drink only just over one liter of water in a 24 hour period ? I see one very easy thing you could try here ;-)
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    Thought I had POTS: turns out it was SA node dysfunction!

    Couldn't be happier for you, @Sushi . I'm also reminded of how important it is for all of us -- to the extent that we're each able -- to keep pursuing a more 'definitive' or 'fundamental' diagnosis. I'm so glad you've stayed so well informed, so glad you've kept at it all this time, and so...
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    Dry eye syndrome and the subsequent risk of CFS - a prospective population-based study

    This actually can be a sign of dry eyes. I think it's called 'paradoxical epiphora.'
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    Time to stop work?

    Ohhhhh, such a tough decision ... and ... potentially ... for "all the marbles." Decisions like yours always take me back to an old favorite movie scene. I'm guessing you'll quickly know why ;-) https://www.phenompeople.com/blog/lessons-from-butch--sundance-the-fall-will-probably-kill-you...
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    Is there anyone on this site who is recovered?

    Sometimes people ask a question like this because they want it to provide them with hope -- hope that they can get better. Makes sense, right ? So I think it might be worthwhile to point something out that may or may not be intuitive: asking how many severely ill PWME have recovered ... on a...
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    Possible connection between these symptoms?

    Has stopping the coffee enemas had any salutary effect on any of your symptoms ?
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    Calcified Manganese in the Pineal Gland

    Clearing up ambiguity is definitely an art .... but ... in general ... in forum/newsgroup convention ... unless you quote somebody else, you're generally presumed to be responding to the original post. [changing topic and no longer addressing you, @Learner1 ] While nothing the OP wrote here...
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    Lambert-Eaton Myasthenic Syndrome (LEMS) Confirmed!

    https://rarediseases.info.nih.gov/diseases/6851/lambert-eaton-myasthenic-syndrome Fatigue doesn't always cause/mean cognitive dysfunction but it definitely can contribute.
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    Lambert-Eaton Myasthenic Syndrome (LEMS) Confirmed!

    You might find this interesting: https://www.ncbi.nlm.nih.gov/pubmed/25993122
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    Lambert-Eaton Myasthenic Syndrome (LEMS) Confirmed!

    How many places could you come and have people cheering for/with you because you found out that you're sick ? :-) We all know we're sick. Getting a diagnosis that drives a safe, effective course of treatment is huge. Epic. I'm really happy for you ... particularly knowing how low you've...
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    Heart Disease and POTS/CFS

    Yep. My medical knowledge is the proverbial 'inch wide and mile deep' but it definitely sounds like autoimmune and autonomic is where your answer lives. Thanks much, GG. I think I'm really just doing what nearly all of us have to do -- whatever it takes to try to find answers ...
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    Optic Neuropathy and CFS correlation?

    You may want to look into autologous serum eye drops and scleral contact lenses. The difference they can make ... can be huge. Good luck !
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    Heart Disease and POTS/CFS

    It's an excellent question. I don't really know the answer. I do know that it's a matter of some controversy. If you're interested, here's an excellent article. You may want to just peruse the 'Summary and Conclusion' section: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1785227/ And I'm...
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    Heart Disease and POTS/CFS

    I always like to preface this with "In my very personal opinion ....." I don't actually believe that we 'get' cardiomyopathies and diastolic heart failure per se. I believe things like that are what we have -- what's really wrong with us (those of us with these Dx's) and what's making us sick...
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    Eye problem

    Can your friend travel (to Paris) ? I have a lot of faith in this eye doctor: http://www.institut-vision.org/en/chemokines-and-physiopathology-of-the-eye-anterior-segment/item/125-baudouin-christophe.html If he does not feel that he is the right doctor to see your friend, I believe he would...
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    Article: How the Flexner Report Hijacked Natural Medicine - Cancer Tutor

    Though I only skimmed it, you may find this article interesting, too: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3178858/
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    high resting heart rate

    Forgive me. I can't remember much of your history. But .... Which one of these best describes your current running ability: - I can run like I used to - I can run like I used to but get (serious) PEM - I can't run like I used to. When I try ..... ? [fill in the blank: what...
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    Why is my blood pressure rising?

    Could be the Valcyte. It's a 'very common' side effect of Valcyte (up to 18% of patients): https://www.drugs.com/sfx/valcyte-side-effects.html Worth a phone call to the prescribing doctor's office .....
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    Custom made ear plugs

    If you have 'normal' ear canals then I agree that any of the cheap ones can make a big difference. But they never stayed in my ears, and I tried probably a dozen kinds. They all fell out virtually right after I fell asleep. Eventually, I had a local audiologist make me a custom pair (no idea...
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    Two cents worth of free advice -- persistence [LONG]

    You're exactly right, @mariovitali . The current theory about the pathophysiology of DRESS Syndrome is that it sets off a cytokine storm (ie, it sets off a bomb in the immune system) and that it induces "transient hypogammaglobulinemia --" suppressing the immune system and allowing latent...
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    Two cents worth of free advice -- persistence [LONG]

    Somebody PM'd me to ask me how this all came on -- what my initial symptoms were. Another long post ... in hopes that it may help somebody else :) One day, in September 2014, I got dizzy walking up the stairs, felt heart palpitations in my chest, got short of breath with only a bit of...
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    Two cents worth of free advice -- persistence [LONG]

    @mariovitali You're absolutely right about hemochromatosis being a possibility. My sincere thanks. But the hematologist said that my serum ferritin levels were actually a bit low. While that doesn't definitively rule it out, it tends to reduce the likelihood that this is my underlying...
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    Two cents worth of free advice -- persistence [LONG]

    Many thanks, @valentinelynx . They are consistent with "Small Heart Syndrome." One of the first contacts I made was with Dr. Kunihisa Miwa in Japan. I think he was looking at this before Dr. Newton. But the question I haven't ever asked Dr. Miwa was ... "Did you ever order Endomyocardial...
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    Two cents worth of free advice -- persistence [LONG]

    It's been a rough go for me lately but I feel like I should push myself to write this in the hopes that something ... anything good might come from it. I've said some of it before .... @debored13 is having some cardiac symptoms. Many of us are. I suggested that he look into Cardiology and...
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    Hypertension, POTS, and White Coat Hypertension

    It might be worth seeing a cardiologist. An ambulatory BP monitor would let them see your BP over time, and at home. An echocardiogram and an EKG probably couldn't hurt either.