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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. P

    Coronavirus Vaccine(s)

    OK so I got the Pfizer vaccine on March 9. Quick background: I hung out here for a couple years when I was extremely sick with symptoms identical to most of yours. I just had the hepatitis B vaccine, but also a new CMV infection, and I even went to see the doctor at nova southeast University...
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    It's settled - DHEA raises free testosterone

    This is an old thread but I found it with a relevant google search. So i wanted to add my input: I have had low testosterone (hovering 295 to 300) for quite some time (im a 42 yr old male who has had low T for over a decade). I started taking 6mg of DHEA via a micronized sublingual (let it...
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    What does this test result mean?

    @Jonathan Edwards - I didn't realize you were a doctor. I apologize if my previous post was somewhat offensive. Many years of unpleasant experiences. Also reading that Reddit sub has really affected my view of physicians. I simply can't believe the extent of dislike an annoyance they have...
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    What does this test result mean?

    @Oredogg - it continues to fascinate me that I can find people about 10,000 times more educated on medicine than any doctor I have ever seen, simply by going online. You should read the /r/medicine subreddit sometime to see the kind of disgust and hatred physicians there spew about their...
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    What does this test result mean?

    @Oredogg @Jonathan Edwards AST and ALT are doing really well. 22 and 17 respectively I believe. Haven't had GGT checked. Not sure on Alk phosphate. But none of my numbers on standard CBC / renal / liver panels are out of range. I've Since gone to the Institute for specialize medicine...
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    What does this test result mean?

    @Jonathan Edwards - Thank you so much for explaining this. My one very healthy organ right now is my liver. So that may be why they ignored it. It was however a "given" that I either have an immune disorder or a malignancy. So its still a bit strange that this artifact wasn't explored a bit...
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    What does this test result mean?

    Its part of the medical "culture". I had a doctor explain to me that his job is to make sure that when you walk out that door, you're not going to die on the street. Aside from that, his job is to treat your symptoms and make you less uncomfortable. You can see how such a mentality has...
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    What does this test result mean?

    My symptom set has always been indicative of some sort of immune disorder. I've always known that, even though doctors in their infinite wisdom rejected it, because my ANA was always negative. I was just pouring through some test results to see when my last ANA was, because I feel like I've...
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    Just found out I have active lyme disease. I am stunned. Help!

    I agree with the above. I realize everyone is just trying to find answers. But I think there's a lot of "LLMDs" that are making money off of this. When "everything is lyme disease" simply because we can't figure out what it is, something is wrong. I fell down th lyme disease rabbit hole when I...
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    Chris Kresser on Low Dose Naltrexone (LDN)

    This one just came out and Im still only mid-way through watching it, but as always, its super informative. Thought some here might find it interesting. https://www.youtube.com/watch?feature=player_detailpage&v=l8sWzoLtop4#t=107 -PB-
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    Chris Kresser's Podcast / Website Helped me so much

    I couldn't agree more. I have literally listened to every one of his podcast episodes (took me a few months), and I am the most critical person alive when it comes to clinicians, doctors, and their lack of knowledge / understanding. This guy knows more than all the doctors I've seen, combined...
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    Chris Kresser's Podcast / Website Helped me so much

    1) Exercise. Mild. Whole body. Both weights (every muscle group) and Cardio (treadmill breathing very deep). 2) Rest. Ample rest between. Always in bed by 10pm. Always 8 hours of sleep or more. Even if it meant taking NyQuil at 5am when I would wake up. The exercise helped fix sleep...
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    Treating CMV with Bovine Lactoferrin

    @shannah - that would make sense. In the study above they did 1mg per 1gram of body weight. For me (185lbs) thats something like 38,000mg !!!!!!!!!!! If you google Lactoferrin Hep C dose ... they tend to hover around 1,000 to 3,500 mg per day as a treatment dose.
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    Treating CMV with Bovine Lactoferrin

    While trying to get my CMV under control, I have been doing a lot of research on possibly helpful supplements. There was a surprising amount of actual data on a few of them and I wanted to share this one in particular, which seemed to be the rock star of them all: Lactoferrin...
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    My Million Dollar Question: Virus or Immune Malfunction?

    Hmm. That didn't answer my question but ok. ;) Just wondering why the topic was introduced to this thread specifically. @Valentijn @SOC @heapsreal @Hip May I ask you all this? Aside from that lactic acid disorder, have you ever heard of a disorder that results in systemic inflammation...
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    My Million Dollar Question: Virus or Immune Malfunction?

    @wastwater @w john martin - Im confused. Why are you entertaining simian CMV versus regular CMV? Is there something about simian that makes my symptoms more explanatory? Or something I said that might indicate Simian over human? I've just retested CMV igm today to see if I am currently...
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    My Million Dollar Question: Virus or Immune Malfunction?

    The whole lactic acid buildup thing has absolutely crossed my mind several times. Never knew of how it might be working or by what mechanism though. I definitely had muscle burning all over for awhile there and yes - exercise would alleviate it. But as mentioned, it's all now morphed into...
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    My Million Dollar Question: Virus or Immune Malfunction?

    Thanks @SOC - yeah this is such a mystery. And I often don't know if I belong here. But you guys are without a doubt the most intelligent, informed people in medicine I've ever interacted with. And that includes all my doctors. They may be smarter, but they rarely communicate or invest much...
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    Have you ever tried an autoimmune diet protocol (like Paleo AIP)?

    I credit the vast majority of my recovery to dietary changes. Eliminating Gluten, wheats, noodles, caffeine, sugar, and other inflammatory foods has completely eliminated multitudes of symptoms. Chris Kresser was the one who lead me down this path, and he actually supports a "modified paleo"...
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    Low Dose Naltrexone Question: NK Cells and CD8

    If I had a dollar for every person who has suggested I try Low Dose Naltrexone, I would be rich. I finally was listening to Chris Kressers podcast today and he mentioned it as well. As it is a Central Nervous System sedative in some fashion (which is exactly what I need). My question about it...
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    Chris Kresser's Podcast / Website Helped me so much

    I still listen to his podcasts religiously. They are so full of helpful tips. There are some reviews that surprised me saying he didn't have the best bedside manner in person, but everyone's got an opinion I guess. I rarely agree with most people on things :) Better yet, he's starting a...
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    My Million Dollar Question: Virus or Immune Malfunction?

    Is this the million dollar question for everyone here? Its my million dollar question. And as the months go by, and "whatever it is" continues to creep up on me, I get more and more frustrated because I know I could be taking action. But the possible actions are opposites. If its a virus...
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    Tenofovir, is it similar to cmx001?

    Well I guess I am in a unique position to reply to this thread. But @heapsreal I think you already know my story. I got into this mess in the first place by taking HIV anti-retrovirals. Therefore for what its worth, I would absolutely advise you to stay as far away as possible from them...
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    Do a lot of people here have elevated Lymphocytes?

    @Valentijn Wish I could figure out why my Lymphs are always a little high now. I suppose its my new CMV infection that I got 3 years ago. It pretty much ruined my health. Even though every doctor said that wasn't possible from CMV. I have a feeling it, and Epstein Barr are just...
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    Do a lot of people here have elevated Lymphocytes?

    @Thinktank - Usually I have average "WBC" and higher than average Lymphocytes percent. By just a nudge. Neutrophils have been generally on the low end of normal. My most recent test is showing slight higher WBC. Normal Lymphs %. But "high" Abs. Lymphs. I realize there are a thousand...
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    Chris Kresser's Podcast / Website Helped me so much

    I don't know what I have, and neither do my doctors. But I am very much in the same boat as all of you. I just have to share this resource that I have lived and breathed by for the last 2 years. Because taking his advice has totally transformed my symptoms and my world. Mind you, I am the...
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    Do a lot of people here have elevated Lymphocytes?

    Just wondering if it's somewhat common for CFS patients to have slightly elevated lymphocytes? Not necessarily really high. But kind of an ongoing, constant elevated white blood cell count. Specifically lymphocytes. This has really been my only consistently abnormal test result for the last...
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    Why does vitamin d make me so tired?

    I just wanted to chime in on this thread. Found it through a Google search. Sorry for bumping an old topic. I do also get some sort of inflammatory reaction from Vitamin D even at doses as small as 1,000 IU. I get very fatigued, but its a nice and calm tiredness. The more worrisome symptom is...
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    Positive Antibodies, Negative PCR's

    Nowhere in this thread did I state that it might not be a *different* pathogen. I very clearly stated that it can't be *the ones I tested for*. Why is quoting me accurate here? Because as you already are aware, Dr. Rey wants to put me on Valcyte for CMV. Im not going to take Valcyte...
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    Anti-inflammatory + Immune Booster = Misnomer?

    I constantly see things like Turmeric being labeled both anti-inflammatory and immune boosting. Aren't these opposites? I realize there are different immune chemicals that all do very different things, but I doubt that "Sally the health blogger" is thinking on that deep of a level...