• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. pinkytuscadaro

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    KangaSue, Sorry I did not see your answer. Unfortunately I have sever cognitive issues and most of this technical stuff is way over my head. I just know that 3 summers ago I was so sick I could hardly stand or walk and I bought this arginine powder ( it had helped me when I was young before...
  2. pinkytuscadaro

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    Gregg, I know it is counter intuitive but L-arginine seems to really help me. I wish I knew why????
  3. pinkytuscadaro

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    I just ordered the Greg, do you know of a product like the one NO2 black that does not have ala? I am chelating for mercury and I am on a strict 3 hour ala dosing schedule and can not take it once a day. I have felt a big difference while taking L-arginine and so I think this may be a great...
  4. pinkytuscadaro

    ADENOSYLCOBALAMIN, THE VERY LARGE GORILLA IN THE ROOM

    I have a question that I have not seen asked yet: I have the solgar metafolin and my question is are we suppose to take it sublingualy too? I have been but have not seen that it is required? I also have methyl mate from yaskow and it is in liquid form, I have sniffed this up each nosrtil and am...
  5. pinkytuscadaro

    Folate deficiency may need B12 treatment FIRST

    Hi Freddd, First of all I want to thank you from the bottom of my heart for your kindness in sharing this information to all those who have suffered with you over the past decades of our lives. For me it has been since the age of 12 and if I really think about it, since birth. I became bed...
  6. pinkytuscadaro

    MAF 878 Available - Anyone already using it?

    rrr, thank you for your i mformative post. I do not think the yogurt had any mold on it. I did want to caution everyone: the first maf I received was yellow and the consistency like that of kefir. It was fine and I made my batch and all was well, however the second batch that came was bad...
  7. pinkytuscadaro

    MAF 878 Available - Anyone already using it?

    The dizziness is so overwhelming that I can not discern any other differences. I am wondering if I somehow caught an inner ear infection? My ears do not hurt or feel swollen? I do not know how the yogurt could be causing this?
  8. pinkytuscadaro

    MAF 878 Available - Anyone already using it?

    OMG!!!! I had hoped the dizziness would go away but it hasn't. I will ask my nurse about that clive thank you so much. I ran out of yogurt 2 days ago and I am still dizzy. I do not know what brought this on but started maf878 a couple of weeks prior. Pinky
  9. pinkytuscadaro

    MAF 878 Available - Anyone already using it?

    Hello UK I have been waking up earlier which is a good sign. However I also just added Hydrocortisone 25mg a day and that has been a great help to me. It is hard to know what is causing me to wake up earlier. The waking up earlier has just started. I was extra tired prior to this. I am also...
  10. pinkytuscadaro

    MAF 878 Available - Anyone already using it?

    Well I received my second starter from Dr. Enlander and it arrived spilt in the baggy; it also looked a lot more watery than the first batch I received,I put it in the refrigertor. I tried contacting the office via Ebay 2 times and nobody has gotten back. Today I decided just to try and make it...
  11. pinkytuscadaro

    MAF 878 Available - Anyone already using it?

    Hello all I suddenly today became very dizzy and sick to my stomach. If I raise my head I become dizzy and very nautious. I have had to lie with my head flat and no movement to prevent the dizziness/nausea. I have never had this before could it be from the yogurt? If anyone knows please let...
  12. pinkytuscadaro

    MAF 878 Available - Anyone already using it?

    Hello all, UK I have not gotten any intestinal benefits yet either. I orderd some more starter so I would not run out. I am going to order the injectable soon. Pinky
  13. pinkytuscadaro

    MAF 878 Available - Anyone already using it?

    Well I have been on the yogurt for 3 days and I can not tell much yet. My throat does get sore after I take it and then I seem to be tired...not much different than usual. Pinky
  14. pinkytuscadaro

    MAF 878 Available - Anyone already using it?

    Ukxmrv, hi so you are at day 3 on the full dose per day? I will start mine on Saturday. I had a pretty good day today after being up half the night. I was even able to make it to a doctors appointment. I have also been on hydrocortisone lately which has done a world of good for me. I will...
  15. pinkytuscadaro

    MAF 878 Available - Anyone already using it?

    Well now it is about 8 hours after the first tsp of the maf 878 to my surprise I began to have first stomach issues, a little pressuer maybe? The it left now this evening my liver started to ache, or it was at least in the area of the liver, now I am still up at 2:03 am and I have had to take...
  16. pinkytuscadaro

    MAF 878 Available - Anyone already using it?

    Hello everyone I just received my maf 878 yogurt starter today. I made it according to the directions and have it sitting in a glass jar that is in a cardboard box and I put a heating pad on low on the bottom wrapped in a thick towel. It think that will bring up the heat although directions...
  17. pinkytuscadaro

    Article: The Long Road: "Chronic Fatigue Syndrome: A Novel" Author Returns to 'Health'

    I had a cousin who had something very similar to CFS who got well while getting cancer treatment. Her illness slowly returned after cancer treatment. She must have been on methotrexate or retuximab. Pinky
  18. pinkytuscadaro

    xmrv+ starting AV's tenofovir and raltegravir

    Well I guess that this will be my last post since I have decided to quit the RV's With all of the continued news coming out about contamination and with the results of others on RV's not doing so well I just do not think that it is worth the risk of taking them at this time. Update: I will...
  19. pinkytuscadaro

    xmrv+ starting AV's tenofovir and raltegravir

    I maybe should be more discriptive of how I have been feeling on the RV's.... I feel like I have a lingering flu all of the time. I had a migraine last week the kind that leave you on the floor vomiting until you have nothing left but gull and your head finally hurts so bad that you can no...
  20. pinkytuscadaro

    xmrv+ starting AV's tenofovir and raltegravir

    Reporting in: I just looked at my RV starting date January 28 2011. I have been very weak. I had my blood drawn last week and have not heard anything yet. The RV's initially caused really bad stomach upset and extreme eye sensitivity. Both of these issues are much better now 6 or so weeks...
  21. pinkytuscadaro

    Article: Hope for Ampligen-Breaking News!

    Kelvin, Do you know how much the cost will be per year for treatment? Have you been able to wean off of Ampligen or is it a lifetime treatment? Thanks Pinky
  22. pinkytuscadaro

    xmrv+ starting AV's tenofovir and raltegravir

    Link for free isentress if your income qualifies. A single person can make over 50,000 and still qualify and the income level goes up accordingly if you have dependents www.isentress.com/isentress/shared/documents/SUPPORT_enrollment.pdf If the link does not work you can googel Isentress...
  23. pinkytuscadaro

    xmrv+ starting AV's tenofovir and raltegravir

    Thank you Esther how kind of you and I will support you as well. My NP forwarded me this article today and I thought it was helpful in regards to xmrv and treatment. Pinky ----------Greetings! This Update on XMRV is by Dr. AzRa Mael, MD: What is XMRV (aka Xenotropic Murine Leukemia...
  24. pinkytuscadaro

    xmrv+ starting AV's tenofovir and raltegravir

    Hello, checking in to let everyone know how things are coming along :) I am a little past my 3rd week on RV's and I am doing better: my stomach is still sensitive but nothing like it was the first 2 weeks. I have had a harder time falling asleep since starting the RV's and LDN but that too...
  25. pinkytuscadaro

    Faecal transplant eases symptoms of Parkinson's (and CFS)

    Dainty, I am considering it for sure. Please Dainty keep me up to date on your research. If the RV's don't work out for me this may be my next trial. We never know what tomorrow may bring :) Pinky
  26. pinkytuscadaro

    xmrv+ starting AV's tenofovir and raltegravir

    I just read that Dr. Mikovitis is the one who said that RV's seem to work for 6 months for those with xmrv and then all symptoms begin to return? Here is the relevant part to the post I am referring to on RV's: "along with Brewer’s patients and a few others. She has noticed a common theme...
  27. pinkytuscadaro

    xmrv+ starting AV's tenofovir and raltegravir

    Hello everybody and thank you for your suggestions. I started LDN and the RV's on the same day at the full dose so I am sorry if that confuses things. Since I am in it to this degree I better just stay the course. So far I have not experienced anything from this treatment that has been...
  28. pinkytuscadaro

    Antiretroviral Trial

    Daff, I was wondering if you took the RV's with activated b6 if that would help them to cross the BBB? I know when you take singular aminos they say to take them with b6 to make sure that it crosses. Also Alpha lipoic acid crosses the BBB, maybe taking the RV's with ALA in a low dose would...
  29. pinkytuscadaro

    xmrv+ starting AV's tenofovir and raltegravir

    Navid: I am going to make an effort to eat more before taking the RV's and will post back if it helps. Sushi: Thank you for the info on LDN; I'm happy to report no more depressive events. I know that it messes whith ones brain when first getting use to it but think it has good...