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

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  1. G

    Save big money by buying expired/overstocked supplements

    I have OCD also so I understand! Just not OCD in this supplement regard. I just hate wasting money on supplements and it seems that most are good for years and years after the "expiration".
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    Save big money by buying expired/overstocked supplements

    @minkeygirl Well, many medications have been shown to be OK for up to 10 years after "expiration"! How would a 2 month expired supplement not work? I think they are just trying to justify making us spend much more money by thinking something is not good after a few months. Its like the "sell by...
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    Save big money by buying expired/overstocked supplements

    @minkeygirl The sites I posted above have really expenive brands like Metagenics, Pure Encapsulations, Thorne, etc., for really cheap. Hard to find those brands discounted!
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    Save big money by buying expired/overstocked supplements

    I wanted to share two websites that I often buy supplements from that offer huge savings on supplements, many high quality brands like Metagenics, Biotics Research, Pure Encapsulations, etc., because they are expired or they are overstocked. (No, I don't work for either company! And yes, use...
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    Experiences with AveULTRA? (Avemar)

    Is there anyone here who has experience with AveULTRA? (Fermented Wheat Germ) It is also know as Avemar. There is a ton of positive information online about this product for use in cancer patients and it sounds very interesting. Limited online information about use in other diseases. It is...
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    Not just a women's disease

    And you forgot to put "middle aged" in front of women....since the CDC still maintains that: The illness occurs most often in people in their 40s and 50s, but people of all ages can get CFS" This bias against men and young adults (the later most often severely affected by sudden viral onset)...
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    Oregano OIl and damage to the intestinal tract. Help!

    Sorry to hear that, Janet. I actually do not tolerate probiotics either. I just have to after the Oregano oil. Do you have IBS or just yeast problems? IBS for many is actually SIBO, thus why probiotics make many of us worse. I am using Gelatin to help the gut, which is an alternative to bone...
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    Oregano OIl and damage to the intestinal tract. Help!

    I have used oregano oil several times in an on going battle against IBS, as you know, is VERY strong and it kills off both the beneficial and bad bacteria, so you can run into problems. I also over did it with the Oregano once. It sounds like you need to seriously repopulate your gut with...
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    Reuters: Market failure can be sign of fatigue

    Great article. I think more people haven't read it because of the title. It sounds political or like it has something to do with the stock market. I thought it was about the stock market at first glance :) Maybe changing the title of the post or reposting with a new title would help get more views?
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    Can it be that I have me/cfs

    @Redgreen33 Hi! I didn't have time to go through all your threads, but the fact that your symptoms got much worse after taking and then stopping Zoloft makes me think you could have had a hypersensitive adverse reaction to the medication, and possibly are suffering from SSRI discontinuation...
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    Dr Drew insults women's health problems as "garbage bag disorders"

    Yes. And then the mindless pions repeat the BS as if it is actual fact. That is how our society gathers its news and information now a days. They can't be bothered to research a topic themselves with an open mind. I am starting to sound like an old grumpy man. Bring me my rocking chair!
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    Dr Drew insults women's health problems as "garbage bag disorders"

    This is not the first time he has made these remarks. I remember quite a while back a woman with IC called in and he first asked her if she took "spinning classes" (exercise class) that could cause that sort of pain, and when she said no he immediately went into the whole "has there been any...
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    Dr Drew insults women's health problems as "garbage bag disorders"

    http://www.salon.com/2014/04/29/dr_drew_doesnt_understand_your_garbage_disorder/ http://jezebel.com/dr-drew-insults-women-with-endometriosis-ignites-mass-1568906681
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    Patient Experience: "What Bronllys taught me about pacing."

    I have to agree with Rachel. While happy to hear that anyone with any illness has improved...... This article made me cringe, for the harm it could do others. And I have to point out, 90% of patients with ME would never be able to follow program that requires them to be awake at a set time...
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    In the USA, too: 15 year old with Mitochondrial disease labeled Psychosomatic, 1 year in Hospital "

    Jessica, 25, is the second-oldest of the Pelletiers’ daughters and has mitochondrial disease herself. The disease can manifest itself in various ways, but at its root, results from a defect in the mitochondria, an organelle inside cells that produces energy. Jessica’s diagnosis was established...
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    In the USA, too: 15 year old with Mitochondrial disease labeled Psychosomatic, 1 year in Hospital "

    Thanks, Kina. I thought I had seen this story before somewhere....low and behold, it was probably here! I just saw the father on TV two nights ago with the latest update.
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    In the USA, too: 15 year old with Mitochondrial disease labeled Psychosomatic, 1 year in Hospital "

    Saw this on the news and can't believe this is happening here. You can google her name "Justina Pelletier" or her father "Lou Pelletier" and find all sorts of links. She has been in Boston Children's Hospital for almost one YEAR after they disagreed with another facility and physicians who...
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    "Canary in a Coal Mine" 12/3/13 Decide Who Talks to the Tribeca Film Institute!

    Hey everyone. Just an FYI- after you enter your email to vote, you have to go into your email account and click on the link to submit your vote- otherwise it will not count! So check your email right after and make sure to click on that link. I didn't see this yesterday, so my vote was not...
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    "Canary in a Coal Mine" 12/3/13 Decide Who Talks to the Tribeca Film Institute!

    Voted. Everyone please vote for this. It is so simple, and could bring so much (hopefully) positive exposure for the film, and for me/cfs.
  20. G

    Prostaglandin D2 suppresses human NK cell function via signaling through D prostanoid receptor

    Thanks, Alex! I am surprised that some people are taking up to 3,000 mg a day (not ME folks). I can not take fish oil at all anymore. It causes severe exacerbation of insomnia and anxiety, and actually causes me to itch all over. I don't know if I developed an allergy or what. I took it for...
  21. G

    Prostaglandin D2 suppresses human NK cell function via signaling through D prostanoid receptor

    @alex3619 Does it matter if EPO is taken in the morning or night (for sleep?)
  22. G

    Prostaglandin D2 suppresses human NK cell function via signaling through D prostanoid receptor

    I thought I would revive this thread as it is of interest to me, espeically Evening Primrose/GLA and its relation to sleep. @alex3619, your posts on this subject have been very helpful. I Was wondering if you had an opinion on how much Evening Primrose would be helpful? I understand that more is...
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    Should I get a copper IUD while I have M.E.?

    Elaine from "Seinfeld": "You're not sponge worthy!!" The Today Sponge is still available, and costs around $15-$18 for THREE sponges! As Kramer would say, "That's kooky talk!" It better be really worth it for $5+ a........ya know? ;) Does that make me sound cheap? ;) I assume the Sponge is...
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    How do you pay for medical bills?

    No. Many or most have no job, no health insurance, and are financially destitute to the point where they can not even afford to see a doctor anymore. I have heard of people spending over $200,000 out of pocket, not even including insurance deductibles and co pays, to try to treat their illness...
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    A great starting point for M.E. tests......

    No it is not uncommon. But I can't seem to find it on labtestsonline either. ??? I have been tested through Quest and Labcorp several times. It is a common easy test for people with me/cfs. So is CMV. I would just ask your doctor. He/she will surely be able to locate the test in their computer...
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    A great starting point for M.E. tests......

    Both CMV and HHV6a can cause mononucleosis type illness. If your are testing low-negative for EBV, perhaps it was one of these other 2 herpes viruses that caused your initial mono type infection?
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    A great starting point for M.E. tests......

    roxie60 I was thinking of HHV6a and CMV. Were you tested for those as well? Sorry if I misread your post or you already answered!
  28. G

    A great starting point for M.E. tests......

    roxie60 Yes that is it. I wasn't sure if you were tested for the EA specifically. I was tested at 3 or 4 different labs before one of them ran the EA. It was positive for me...years after an initial bout with mono. Are you + for any other herpes viruses? I am always interested to hear the...
  29. G

    A great starting point for M.E. tests......

    roxie60 Have you had the EBV EA? It is usually not included in the regular EBV panel. They usually just run igg, igm, one other I can't remember, and then mono spot. I believe, most labs don't do the Early Antigen test. I could be wrong.
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    A great starting point for M.E. tests......

    rlc I was wondering, do you know Dr. Mirza? His comments are intriguing, but I would like to have some case histories of some of his "cfs" patients that he later diagnosed with other problems. I understand he is saying that he does not believe in cfs. I would be very interested to hear some...