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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. aepalisades

    Lauricidin

    El-squared- Just to update you on the progress. I have only been at the full scoop about a week. I just had my second flare on lauricidin- It appears to be retriggering my old infections- this one is yeast infection! Haven't had one in about 3 years and can't tolerate the carbs or sweets that...
  2. aepalisades

    Lauricidin

    I've had Cfs since 1997 following chemotherapy. I've also struggled with recurrent ebv, cmv and hhv6 since that time. I was treated with valcyte, valtrex and famvir in the past by dr Lerner. I was also treated for Lyme disease and babesiosis. Needless to say- I've been a mess for a while. A few...
  3. aepalisades

    Dental Health: Yet One More Challenge For Those With ME/CFS

    For those who clench their teeth: I didnt realize I clenched my jaw, until I started using magnesium oil to try to bring my levels up. I just rubbed in on my thighs and lower legs before bed. Within a few days, maybe week, my jaw became really relaxed, Something I hadnt felt in...
  4. aepalisades

    Fecal Transplants

    I read a study from Canada recently and they prepared / grew their own strain of bacteria fro poo from a healthy female donor in an anaerobic gut like environment then used it to infuse into the ill patients. They called their fake poo "RePoopulate". It sounded like they planned to market it...
  5. aepalisades

    valtrex/acyclovir/famvir some effect on cmv reactivation, maybe hhv6??

    Update famciclovir and cmv I purchased my most recent famciclovir scripts at Costco. I decided to try this because the cost is so much less than Walgreens, walmart or Meijer. I found out that Costco does run my famciclovir through Medicare eventhough I am in the donut hole. But I still...
  6. aepalisades

    valtrex/acyclovir/famvir some effect on cmv reactivation, maybe hhv6??

    Famvir and CMV and Medicare I just recently was started on Famciclovir (Generic TEVA BRAND) after mild help from Valcyte (and no longer tolerating it due to developing persistent diarrhea). I have been diagnosed with persistent CMV, and although my IGM titers have come down to within "normal"...
  7. aepalisades

    Comment by 'aepalisades' in 'The Spitfire Gazette!'

    Hi Spitfire, Carrigon is right. There is goat milk ice cream- Laloos is the brand. I especially like chocolate, it's rich and creamy. You can also make your own ice cream from rice milk, almond milk, soy milk or goat milk- and it's not bad, and NO PAIN! I just went to the health food...
  8. aepalisades

    Has anyone tested XMRV + after taking Valcyte or Vistide?

    I didn't notice much improvement with fatigue until I added B12 shots (which I previously had used but the fatigue came back after 3 months). So I am waiting to see if the fatigue returns.....Or if the Valcyte alone made all the difference, since B12 alone wasn't "it".
  9. aepalisades

    Has anyone tested XMRV + after taking Valcyte or Vistide?

    I am curious if anyone has tested XMRV + after taking Valcyte (or Vistide)? I have been on Valcyte for 2 years (Dr Lerner) and have gained most of my improvement in the last two months. I want to get tested for XMRV, but am waiting for the new serology test (and some money) but am concerned...
  10. aepalisades

    Will WPI find the answers for those sufferers who are XMRV Negative!

    Heart Symptoms and Valcyte Alphahusky- I had a lot of heart symptoms too- severe palpitations which are almost completely gone after taking valcyte. I only get palpitations now when I lay down in bed at night for less than 1 minute the palpitaions act up, amke me cough. Coughing seems to...
  11. aepalisades

    XMRV CREB and LEAKY GUT

    Genova Diagnostics I have not used the permiability test however I have taken several of the other tests they offer. They seem more thorough when they perform the stool analyses and find more pathogens and potential stool pathogens than any labs around me- at other labs, my tests come back...
  12. aepalisades

    Article: Breathing Deep with Valtrex: A Patient Improves

    Wired but tired "fix" Cort- I used to be wired but tired until a CFS doctor told me to take Phosphatidyl Serine. It's been several years since I have taken it, but I believe I took 200 mgs. It is a calming amino acid. A side benefit I found was that I started to dream and have "cartoon"...
  13. aepalisades

    Comment by 'aepalisades' in 'Fighting the Insensitivity of Others'

    Hi Kevin, I am sorry that your doctor has been less than sensitive to you, your health and your symptoms. I personally feel most doctors should not be doctors unless they have compassion which usually comes in the form of a loved one being very ill, and the doctor learning and doing...
  14. aepalisades

    Comment by 'aepalisades' in 'Amped on Ampligen'

    Thanks so much, and take your time, make sure you rest. We appreciate all the information you are providing as each of us live vicariously through your experiences and those of others as well. We all understand how limited energy supplies can prevent us from doing the things we wish we could...
  15. aepalisades

    Comment by 'aepalisades' in 'Amped on Ampligen'

    Kevin What can you tell us about the cost of Ampligen per treatment or over the course of treatment? How many treatments are you planning on taking, and over how many months? What if any is the end point indicator or are you having a set number of IV's? Are you receiving treatment in the...
  16. aepalisades

    Cause of Death among Patients with Chronic Fatigue Syndrome

    Muffin, I came down with cancer in 1996- Hodgkin's Disease ( a lymphatic cancer). Right after chemo ended (in MArch 1997) I started to heal. I came down with the flu (or flu like illness) in the summer. It has been downhill ever since. So I suspect they are linked. I did some looking into...
  17. aepalisades

    Comment by 'aepalisades' in 'Ampligen - Like One Too Many Coors Lights'

    I would be happy to try Ampligen, my life as it is now, is a waste.
  18. aepalisades

    Cleveland Clinic: XMRV in Gynecological Malignancies

    I had a friend (really) that sucessfully treated (twice) cervical dysplasia with intravaginal washing with colloidal silver......Her doctor was ticked to say the least and fascinated but said they would not continue to watch her if she did not follow their protocol in the future. She was...
  19. aepalisades

    Ancient Retrovirus Study/Tufts University & U. Illinois-Chicago

    Do you know if the study is still open, or do you have the link? I would love to have some free testing, I have plenty of blood to share with them!