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    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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    Confused about folate deficiency symptoms

    My experience with Mefolate: Depression within a couple of days. I tried it so many times, and always got depressed. So I decided I didn't need it after all. It can really mess with neurotransmitters.
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    NAD+ vs NADH

    I have the same question. What is the advantage of the reduced form? Who benefits from which form?
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    Friend in Indianapolis needs an ME doc

    Can anyone recommend a good ME doctor near Indianapolis? A friend of mine there has developed debilitating fatigue from an Epstein-Barr infection.
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    I am really worried, I have no appetite. None.

    Dear Tella, I've had extreme weight loss from abdominal pain. The only thing that has helped me put weight back on is ingested medical cannabis; I've gone from BMI 15.8 to 17.6! I discovered that the medical provider has to know how to choose a strain based on the individual's symptoms and...
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    Stress echocardiogram yesterday - clinic employee out of line?

    I actually wrote one last night after I saw what someone put in the report. I don't know who to mail it to: HR or the cardio clinic? It's a big hospital medical group with lots of clinics. I've seen the immunologist there, the infectious disease doc, etc. In my experience, these kinds of...
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    Stress echocardiogram yesterday - clinic employee out of line?

    Guess what! I just got the report. There is an ejection fraction: it's 60%, which my referring PA said was "stellar". Is it? I was so glad to hear it!
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    Experiences with sleep apnea treatment amd ME/CFS

    Thanks, @TiredBill, I just signed up on Apnea Board. Off to the hospital tonight for my second "sleep-over", this time with the CPAP. I had 40 "events" per hour on my diagnostic. AHI, right? My lowest oximetry was 80%. That's all the data I've been given so far.
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    Stress echocardiogram yesterday - clinic employee out of line?

    The echocardiogram (ultrasound) was indeed before the treadmill. And a quick one after they stopped the treadmill. I did have leads hooked up, so I'm assuming those were EKG wires. I hope you're right. The nurse who called me to make the appointment was the one who told me that the ejection...
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    Stress echocardiogram yesterday - clinic employee out of line?

    Sorry about the long reply, just needed to vent. That clinic is one of the worst I've been to (for interactions). I was feeling OK by evening yesterday. Today, of course, the post-exertional symptoms flared up in the afternoon. Big gut-ache & inflamed sinuses/brain fog and mild neck spasms. A...
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    Stress echocardiogram yesterday - clinic employee out of line?

    Thanks for asking, GG. The ultrasound tech was great. I told her I had air hunger, and while she was setting me up I was reclining, so I had enough air to tell her a bit about the post-exertional symptom flares and the pattern of air hunger & worse brain fog coming on 2 years ago. And that I...
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    Stress echocardiogram yesterday - clinic employee out of line?

    A PA referred me for a chest X-ray and a stress echo because I complained that I've told 5 doctors about my disabling air hunger and none of them has seen a need to do any cardio testing. I've never had any cardio tests other than pulse oximetry/blood pressure. When the cardio clinic called, I...
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    Could albuterol trigger a respiratory infection?

    Oh boy, do we! Apricots from our tree, grape glop (from juicing our seedy zone 4 grapes a couple years ago), a store-bought mix of mango, papaya, strawberries, pineapple. I'll make a smoothie. Fantastic suggestion. Just to Urgent Care. Strep was negative, monospot was negative. No, but last...
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    Could albuterol trigger a respiratory infection?

    Thanks, both of you. I had no idea that albuterol could do that so suddenly after 3 days of tolerating it. The possibility of asthma wasn't really on my radar, even when they did the spirometry. And the inhaler didn't ease my breathing except on the very first dose. After that ... nothing...
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    Could albuterol trigger a respiratory infection?

    Because of my air hunger, a doc put me through an asthma test last Jan. -- spirometry. She told me I didn't have asthma. Recently I saw a PA at the same clinic who thought my asthma result was inconclusive, so he had me try an albuterol inhaler as an experiment. On day 4 I developed a sore...
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    How can I get the data from my tilt table test?

    I ordered the results of my tilt table test from the hospital records department, and they arrived today. I had asked for all the data. They sent me two BP readings and two pulse readings. That's it! How do I get the rest of the data?? I was lying down for 10 minutes, then vertical at 70...
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    The Great VDR Taq/Bsm Debate

    I don't know; I've never made that connection. I assume you must be talking about high calcium in the bloodstream. I really get lost about blood levels of minerals, as they don't seem tell us much about tissue levels. Or did you mean calcitriol? (1,25-D). I think the article is saying that any...
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    The Great VDR Taq/Bsm Debate

    Hi, @btdt, given your reactions to D supplements, perhaps it would be good to request a test for both 1,25(OH)D (calcitriol) and 25(OH)D (calcidiol). From my post above: I still have a high ratio, and have not been able to tolerate supplemental D3, even though my 25(OH)D is down in the bottom...
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    Tilt Table Test Tomorrow

    I don't have the data yet; they told me to call the records department. The tilt test confirmed that my blood pressure goes down and my pulse goes up when I stand. All they did was keep me horizontal for 10 minutes and then vertical for 20. I don't have the data yet, but the operator told me my...
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    Tilt Table Test Tomorrow

    Hmmm. Supposed to be off what? The antiviral? Says who? I took a morning dose of Valtrex at 4:45, and a dose of Cortef at 9:00, and then nothing until 6:00 (just after the test). You know, I faxed them the week before with my medication list and asked if there was anything I should not take...
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    Tilt Table Test Tomorrow

    NMH? Neurally mediated hypotension? It's in the roadmap for testing by @Hip. I'm taking that section with me.
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    Tilt Table Test Tomorrow

    I take it you must have made that request before the test? I can't imagine having a pulse pressure of 8. Mine usually hovers around 30. 97/65 is a really common BP for me.
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    Tilt Table Test Tomorrow

    Thanks for reminding me! LOL, well I could go off my antiviral and my hydrocortisone to achieve that, but then I might not make it to Missoula for the test. I thought if they want to inject anything, I would just suggest sending me up & down a flight of stairs carrying 15 pounds. That will get...
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    Tilt Table Test Tomorrow

    My first visit to a neurologist resulted in a referral for a tilt table test. It's tomorrow. I just want to avoid any permanent problems that could occur. From what little I've read here on PR, it's when they give a medication during the test that you could be in danger of serious...
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    Shortness of breath/trouble breathing

    What sort of results did you get? Does anyone know what kind of MRI would show viral encephalitis (or meningitis)? I've been going around in circles with doctors who don't want to run any tests for this.
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    High dose vitamin B1 (thiamine)

    Would it perhaps be more direct to determine whether you have symptoms of potassium deficiency? And if you do, take/eat potassium to see if you've correctly identified the symptoms? And see whether they occur after taking thiamine, or does something else play in? And does lowering your thiamine...
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    High dose vitamin B1 (thiamine)

    From Charles Weber: Another resource: Immediately after the above, he quotes Charles Weber. This potassium/thiamine balance has been vital for me, so I've read up pretty thoroughly on it. I need potassium, but have to be careful, since it lowers my blood pressure. Thiamine helps raise it.
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    Grains and sugars precipitate neuroinflammation?

    I haven't done FoodStats testing, but my gluten/gliadin tests turned out negative, like yours. The wheat I ingested a few months ago was in a restaurant, so clearly NOT organic. The inflammation response I described above. FWIW, conventional wheat is sprayed with glyphosate right before harvest...
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    Grains and sugars precipitate neuroinflammation?

    Any idea why? I'm still not tolerating vinegar or fermented foods. A bit of mustard is my daily total.
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    Grains and sugars precipitate neuroinflammation?

    I haven't read this whole thread, but was glad to see this, Jaime, since most of my pain/spasms/lymphatic congestion occurs 1"-2" off center at the base of my skull. I pretty sure that it's immune activation from CNS infections, since my illness started with meningitis (EBV). Did you also have...
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    Does Valtrex work this fast?

    That's wonderful, and reassuring, since I'm 61 and have been sick for nearly 26 years. The last 2 years I've had chronic air hunger, which is really disabling. Thanks for the link.