• 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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Search results

  1. L

    Sleep issues is it worth seeing sleep specialists?

    When I first got ill with ME/CFS about 25 years ago, I had a sleep test done. It showed that I was not getting stage 4 sleep and only sleeping with 60% efficiency (whatever that might mean). I have been on Ambien ever since. In the last few years, I began grinding my teeth. It turns out that...
  2. L

    Grocery Delivery--Target (US) and other options

    Unfortunately, Costco has a fairly dramatic price increase when you order online for delivery. It's the same higher price that Instacart charges but if you are a member and order from Costco.com there is not a delivery charge.
  3. L

    Advice for healthy older adults: Get the new shingles vaccine

    Will this be covered by Medicare? That's the problem with the current vaccine. It's not covered by insurance until you are in your 60s.
  4. L

    At Mark's Daily Apple Website -- Interesting ME/CFS Recovery Story

    I believe they are about the same thing. I have been eating paleo for a few years and am now eating a ketogenic diet because of high morning fasting blood sugar (which went down but is still high). Neither diet which eliminates gluten and sugar has helped the ME/CFS symptoms. Lynn
  5. L

    Watching Unrest again, I'm noticing something.

    I always sit with my legs up and crossed at the ankle. My husband calls me the Queen of the Ottoman Empire because we have at least one in every room. Unfortunately, when I get too tired my body automatically tries to get in a horizontal position and I slump in the chair. I am really worried...
  6. L

    "Exercise Tests Suggest Autoimmunity..." Cort Johnson

    I tried Hupersine A. It made me feel awful (can't remember the symptoms though:thumbdown:). If I was sensitive to that, does it mean I probably won't tolerate Mestinon? Lynn
  7. L

    Appointment regarding MCAD with Dr. Afrin 1/26/17

    Hi Jamie, All of the tests came back normal. I chose not to get retested. Dr. Afrin is leaving the Univ. of Minnesota so it looks like I will not get a diagnosis of MCAS. The good news is that I have been doing the antihistamine 1 & 2 protocol since January. I take 1 generic Zyrtec and 1...
  8. L

    Lack of chatter about the Ketogenic Diet

    I started the ketogenic diet with intermittent fasting last November because my fasting glucose came out very high. I lost 25 lbs. Thankfully my A1C for three month average glucose tested normal last week. Unfortunately, I had no ME/CFS symptom relief and a few other problems have cropped up...
  9. L

    Can't find comfortable mattress, in agony when I lie down

    @Dr.Patient I think if you buy direct from companies like Casper, Helix, Tuft and Needle, and Leesa they will pick up the mattress at no charge. They try to donate it to a needy person. You need to verify what their policies are before buying. I can tell you that Tuft and Needle was too firm for...
  10. L

    Can't find comfortable mattress, in agony when I lie down

    Last year, I spent 8 months trying to find a comfortable mattress. We ordered all of them online. We probably tried eight different mattresses. We finally ended up buying the medium firmness one from http://sedonasleep.com/ I still had to add a memory foam topper to it to get the comfort level...
  11. L

    Appointment regarding MCAD with Dr. Afrin 1/26/17

    The appointment went well. He wanted a detailed account of symptoms from early childhood. I think his theory is that MCAS symptoms start early even if they are not noticed at the time. Other than that it was a typical doctor's visit. I asked him if he had examined an ME/CFS patient that did...
  12. L

    Appointment regarding MCAD with Dr. Afrin 1/26/17

    I will be seeing Dr. Afrin tomorrow for my first time to evaluate me for MCAD. I have been waiting for this appointment for 9 months after reading his book last year. It's hard to imagine how much I want the tests to show positive (which seems really weird). But after decades of ME/CFS I would...
  13. L

    HIGH BLOOD SUGAR

    I understand completely. We have just started making cauliflower rice. It actually works fairly well as a rice substitute under things with a sauce. Not that great on its own though, IMO. Costco sells it already riced in the produce section. Saves the preparation energy.
  14. L

    HIGH BLOOD SUGAR

    I forgot to mention the intermittent fasting that I am doing as well. For the last month, I have been doing 16 hours of fasting two-three times per week and 24 hour fasting twice each week. 24 hours is not that hard. I just don't eat between dinner one night and the next. Voila a twenty four...
  15. L

    HIGH BLOOD SUGAR

    Hi Jimbo, In my physical for the past few years my fasting blood glucose was hovering around 99 (pre-diabetes). In November it jumped to 146. That scared me a lot. I don't want to manage diabetes as well as ME/CFS. I thought I had a pretty healthy diet with the Perfect Health Diet. But based on...
  16. L

    NovoTHOR, a ‘Star Trek-like’ Light Therapy for Mitochondria, Wins Invention Award

    I like the blanket. It is very soft and cushy. I tried using it in the winter as a wrap. It was great because Icould tell it was increasing the blood flow. As I already mentioned my breathing deepened coming from my diaphram (which I can barely do even when I am thinking about it). I overheat...
  17. L

    NovoTHOR, a ‘Star Trek-like’ Light Therapy for Mitochondria, Wins Invention Award

    There is a brand called Celiant that has this FIR technology in a fiber. I tried out a mattress pad from Costco. It was an amazing experience. The pad actually improved my ability to breathe. Unfortunately, like most mattress pads, I did not find it comfortable to sleep on. But it was a unique...
  18. L

    Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

    I am not sure when they will publish the results. Mendus said that the manufacturer was working on a paper so Mendu could not publish the results.
  19. L

    Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

    I have tried megadoses of ubiquinol with no effect. I can only tell you that MitoQ has a concentrated huge amount of CoQ10 that is absorbable by your body. I did the trial where they provided the MitoQ for free. For the past 12 weeks I have been buying it retail. This is not an ad. I only...
  20. L

    Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

    It may be coincidental but I have been concentrating on the mitochondria. So I am pleased the Ron Davis is honing in on that scenario. I have been taking MitoQ (a concentrated CoQ10 product) since the Mendus trial began last year. I have no affiliation with the company. It has significantly...
  21. L

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    Hi @Gingergrrl, I believe if they accept your type of insurance (I have Blue Cross MN), you would still have to pay the co-payments and other stuff like deductibles according to your policy. I don't know if he does Skype or phone appointments. I asked if Dr. Afrin was working with someone else...
  22. L

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    The appointment isn't until May 2017. He is booking over a year out. Lynn
  23. L

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    @justy , I didn't have to put any money up front for the appointment. Nobody asked me for any money. I do have American insurance which they will take. Lynn
  24. L

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    I am about halfway through the book. It turns out that Dr. Afrin is practicing at the University of Minnesota now. Since I live 20 minutes from there, I decided to make an appointment. Unfortunately the first available is in May of 2017. Pretty long time to wait. But after over 20 years of...
  25. L

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    I am on day two. I took 6 pills/day. Definitely no miracle cure for me. What's really weird is that one of the reasons I decided to try this is I have high blood pressure. I am monitoring that. Ironically, this supplement is raising my pressure systolic by 25 points and diastolic by 10. I...
  26. L

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    I developed allergies when I was in high school after we moved to a house that was over 100 years old. My mother didn't really believe I was having allergy problems but I was old enough to start taking antihistamines myself. I became an antihistamine junkie. I am kind of worried what that will...
  27. L

    Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

    Hi Gingergrrl, If you have Prime and a Kindle device you can borrow one book a month from Amazon. You have to search for the book from the kindle device then look for the borrow button. I just borrowed this one so it should work for you. I'm looking forward to reading it. Lynn
  28. L

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    That mitochondria information really helped me make the decision to try this. I have minor high blood pressure so I think this will not be risky for me. I just ordered some. I'll keep you posted. Lynn
  29. L

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    I thought that NO2 was a bad thing for ME/CFS based on the work by Martin Pall. How does this fit in? Isn't the Arginine AKG producing more NO2 in the body creating more oxidization? Lynn