• 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. L

    Malabsorption and I think Diarrhea (WARNING: GROSS IMG)

    thanks! Glad to have you on board, Rich, you seem to know a little bit about everything in regard to this illness. I see the Stool Culture, Compre for $169, I never ordered any labs online so I'm going to read more on the FAQs and chat with them. They seem to have all of the tests Quest offers...
  2. L

    Malabsorption and I think Diarrhea (WARNING: GROSS IMG)

    Interesting how peoples first instinct is to turn their head away and ignore the problem, instead of confronting the issue. How can anything get accomplished like that? That is the whole reason this illness hasn't gotten the attention it deserves. People are the most difficult thing to change.
  3. L

    Malabsorption and I think Diarrhea (WARNING: GROSS IMG)

    Thanks tania, I wasn't too sure if that was normal, but that is how my bowel movements look almost every day, sometimes worse. Maybe that is the reason I've lost weight, idk? Right now i'm taking Pancreatin, Acidophilus (20 Billion organisms), Bifidus Balance (5 Billion), Papaya enzymes with...
  4. L

    The Power Of The Nap

    Sometimes when i'm just minding my own business, typing on my laptop, my body becomes weak and achy so I must lie down but when I do lie down for a while (10-20 minutes) I feel a bit more energized than I did before. Not even napping per say, just resting in bed with my eyes open helps.
  5. L

    Probiotics

    Here is what i'm currently taking. Are you familiar with these? What else should i include?
  6. L

    Malabsorption and I think Diarrhea (WARNING: GROSS IMG)

    here is what i take now for g.i help (supps, click to enlarge) anything I should incorporate?
  7. L

    Malabsorption and I think Diarrhea (WARNING: GROSS IMG)

    bubbles, please help. I'm not joking. What can this mean?? I don't drink any carbonated drinks either, just water. The bubbles just keep coming. http://www.youtube.com/watch?v=RwMELrqXAB0
  8. L

    Groundbreaking Study

    Sorry Max, just going by what the title says. here http://www.healthcanal.com/disorders-conditions/24325-University-researchers-launch-groundbreaking-new-study-into-symptoms-chronic-fatigue-syndrome.html maybe they are exaggerating a little.
  9. L

    Is the Media portraying CFS in the best of light?

    First. http://www.camdennewjournal.com/news/2011/dec/health-news-former-mayor-tells-how-she-was-laid-low-devastating-form-chronic-fatigue-s (85 years old, she can have a number of things wrong) Second. http://www.wxii12.com/r-video/29647339/detail.html (I use to like Dr. Oz til I...
  10. L

    Groundbreaking Study

    title: University researchers launch groundbreaking new study into symptoms of chronic fatigue syndrome (Very surprised the UK is doing anything with CFS, as the NHS strongly opposes it for some reason. ) Participants needed to take part in study, the first to look in-depth at vision problems...
  11. L

    stiff neck what helps?

    If the stiffness has been chronic maybe look into an x-ray if you have insurance. If it's transient, maybe physical therapy, manipulative therapy (such as chiropractic or osteopathic), pain meds might help.
  12. L

    Probiotics

    Off topic but my vitamin D 25 hydroxy total use to be 12 when normal was 30-80 ng/mL and now .....25-OH Vit D Total=122! reference ranges: <21 ng/mL Deficient 21-29 ng/mL Insufficient 30-80 ng/mL Optimal >80 ng/mL Possible Toxicity Also I was taking 20,000-25,000 IU Vit D3 daily
  13. L

    Probiotics

    Which do you take? (or pre-biotics) Any preference over a particular strain or culture? I just bought some Lactobacillus Acidophilus and Bifidobacteria (Bifidus Balance) both were refrigerated, as these two were pretty popular in my grocery. Thanks!
  14. L

    Good days/Bad Days

    wanted to bump Sorry, I wanted to bump the thread by adding additional topics to the discussion. Thanks for your responses, Valentijn and taniaaust1 and for not ridiculing me for not having cfs at all because of the short periods of relief I experience.
  15. L

    Good days/Bad Days

    Lake Tahoe Lyndonville What happened to all these people from the 80s outbreaks? I have yet to meet 1 person from those incidents. Have they all died and disappeared?
  16. L

    Malabsorption and I think Diarrhea (WARNING: GROSS IMG)

    Can this explain the bubbles? Small intestinal bacterial overgrowth (SIBO). In patients with SIBO, large numbers of gas-producing bacteria are present in the small intestine. The abundant bacteria in the small intestine compete with the small intestine for sugars and carbohydrates and produce...
  17. L

    Malabsorption and I think Diarrhea (WARNING: GROSS IMG)

    Okay, so as I've previously said in another post I lost a great deal of weight from this illness. Little bubbles from my stools arise to the surface of my toilet, and I'm not sure what this means. Also, the texture of my stool is unusual. An image is worth a thousand words! I see this as...
  18. L

    If you have Cold Hands & Cold Feet, what helps?

    nice! REI has some good deals from time to time. But I want to get to the root cause of my cold hands and feet not just warm them up with heat or insulated boots. I sincerely do appreciate the thought and thanks for the link, the duck down seems nice (I've had goose down jackets in the past)
  19. L

    Good days/Bad Days

    It's hard to say this because this illness is so miserable and life altering, but on your good days or your best of days, do you ever feel a slight sense of normalcy? I don't think a day has gone by where I was entirely symptom-free with this illness but I have had days where I have bouts of...
  20. L

    Great Plains Laboratory

    Just came across this lab. They do specific testing including Test at The Great Plains Laboratory, Inc. to determine abnormalities. a. Comprehensive IgG Food Allergy f. Thyroid Evaluation b. Hair Heavy Metals g. Amino Acid Urine c. Organic Acid Test h. DHEA Sulfate d. Comprehensive Stool...
  21. L

    3 Things that Help the Most!!

    Thank God I found this, I thought it was accidentally deleted. Your experiences are priceless, so I greatly appreciate all of the responses thus far. I know what may work for one person may not for another, but I am hopeful in that I will some day have myself back so I continue to try what my...
  22. L

    3 Best Supplements and Meds

    creative bump! Look how big my basil plant is getting!!! I didn't check on it in weeks :) Today is a glorious day!!
  23. L

    Do You Have Fibromyalgia

    Is this what you are referring to? http://www.offerutah.org/Alanlight2011.htm Central sensitization is the fundamental argument for supporting the mechanism behind migraine headaches, and I'm sure you wouldn't call that idealistic BS. Drugs have been developed that counteract this phenomenon...
  24. L

    Do You Have Fibromyalgia

    I'm certain 99.9% of you know the definition of Fibromyalgia but just in case... Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the...
  25. L

    Pills/methods to get DEEPER sleep? re: daytime drowsiness

    I've done a little research on this... 3 meds are known in the literature to induce a deep stage 3 sleep. (There are bound to be others) You want to look for meds that enhance "slow wave sleep" (SWS) 1. Xyrem (as an off-label treatment for CFIDS/FM very powerful and expensive, known as the...
  26. L

    3 Best Supplements and Meds

    My last post was accidentally deleted before I could jot down some of your wonderful suggestions. I did manage to buy Phosphatidylserine complex from vitacost, but totally don't recall what others has success with. My Big 3 are Low Dose Naltrexone, Valerian Root, and Vitamin D as being the...
  27. L

    We were meant to live for so much more

    Were we not? Look at all the lost potential in here. Just gone. So many missed opportunities. I want more than anything to be able to work, to be apart of the loop. I hear people complain about how busy their schedules are at work or how little they are getting paid, but they truly don't...
  28. L

    Weight Loss associated with ME/CFS

    Does chemist in Aus. mean pharmacist over here? Do you know what that supplement is (the one where you add spoon fulls to food)?
  29. L

    Weight Loss associated with ME/CFS

    I'm not losing weight by the day, but rather lost a significant amount of weight after a flu that I have never been able to regain. I think anabolic steroids is only appropriate for people who are literally wasting away (AIDS, cancer patients) and meatheads. I'm male but I guess you assumed...
  30. L

    Weight Loss associated with ME/CFS

    Anabolic steroids?? I hope you're joking. :) As a side note: There are 2 things I am certain about in my illness, that is no to poor sleep exacerbates my symptoms as well as certain foods (I'm not sure which at this point) I think I just got a flare -up after eating a chicken wrap from Pollo...