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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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Search results

  1. J

    Lots of long COVID patients reporting major improvements with lactoferrin

    I started taking Jarrow brand lactoferrin back in June along with starting a mainly carnivore diet. It is a bit difficult to separate the benefits of each, but with the combination I am feeling a bit better. One difficulty I had was GI problems, I lived on antacids and had mostly liquid stool...
  2. J

    Dental blues

    For many years I needed to get my teeth cleaned every three months. I had complete surgery on my gums twice over the years as well as several additional spot repairs. Now that I have been on the Chlorhexadine a while I have three cleanings a year instead oif four, and I could probably extend...
  3. J

    Dental blues

    I have suffered with dental problems almost all of my life. My dentist finally prescribed a Chlorhexidine Gluconate oral rinse. I just swish a little around in my mouth twice a day, and my dental problems are greatly improved. The cost is less than $ 10.00 a month if your insurance doesn't...
  4. J

    Started Valcyte today for EBV but have concerns

    You need some patience with Valcyte, it took about two weeks before I noticed any change. The blood pressure changes took much longer, it was a slow steady improvement over the 10 months that I took it. I was on a blood pressure increaser medication that I weaned myself off of very slowly. It...
  5. J

    Started Valcyte today for EBV but have concerns

    I took Valcyte back in 2008 for 10 months. I took 450 mg in the morning and 450 mg in the evening. I had many improvements that have lasted until this day. The main improvements were a great reduction in my headaches and a return to normal of my blood pressure. I was at 80/50 with a pulse of 50...
  6. J

    Valcyte uses 2nd,3rd or 4th courses?

    I took Valcyte for 10 months back in 2008 and have not had a relapse since. When I started my blood pressure was 80/50 with a pulse of 50. As you might guess, I was barely able to stand without passing out. As I took the Valcyte I was able to wean myself off of the blood pressure increaser that...
  7. J

    Hypercoagulation + Low Blood Pressure

    I went through a period of decreasing blood pressure and mine eventually went down to 80/50. This condition lasted until I took Valcyte 12 years ago. I had been taking medication to increase my BP, and was able to stop that medication while on the Valcyte, and I have had pretty normal BP ever...
  8. J

    Atorvastatin -- Could It Work For Anyone Else?

    I am reconsidering my previous statement that atorvastatin didn't help me. I never noticed any short term effects from it, but during the time I have been taking it, I have enjoyed improved health. I started the atorvastatin around 2005 and switched to rosuvastatin 20 mg about 3 years ago. I can...
  9. J

    Atorvastatin -- Could It Work For Anyone Else?

    I have been on atorvastatin for many years with no effects on my ME/CFS noticed.
  10. J

    The Puzzle Solver, by Tracie White with Ron Davis

    I have read the book and will pass it on to someone that can make a good case for wanting it. No overseas shipping though. John
  11. J

    High-Dose Selenium Significantly Improves My Fatigue and Brain Fog

    After an initial improvement on selenium I am very disappointed to report that it has stopped helping and is possibly making things worse. I started with a 200 mcg dose and noticed immediately that the wired but tired feelings had changed to not as wired, but possibly more tired, or at least a...
  12. J

    High-Dose Selenium Significantly Improves My Fatigue and Brain Fog

    I am very late to the party, I just recently found this thread and started on 200 micrograms a week ago. I checked the first box of your survey, I have been tested by ARUP and noticed an immediate improvement in my brain. I took the first dose at night and felt an immediate reduction in my...
  13. J

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    @vision blue It has been a long time since I tried the Valtrex and I only used it for a short time, so my memory isn't real precise, but I seem to remember the usual problems, headache and an even more tired feeling. I read the warnings before I started Valcyte and was very afraid when I...
  14. J

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    Not sure why you'd want to use Valtrex after Valcyte, which should have already done the job?? I did this back in 2008. I had no idea of how long to take the Valcyte and neither did my doctor. It was his decision to stop after 10 months and I had no choice. I would have continued for much...
  15. J

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    @vision blue I am one person that has taken Valcyte but was not able to tolerate Valtrex. I took Valcyte for 10 months with absolutely no problems and was tested regularly during that time. I took it for its effect on HHV-6 specifically. If you look at my older posts I have written about this...
  16. J

    A New Hypothesis for Viral ME Symptoms

    I have never had a remission to normal, but I have greatly improved from my low point and have remained there for eleven years. I became ill at 43 years old after a cold. For a long time I thought that I had gone from healthy to unhealthy in a few days. After thinking about this a lot, I...
  17. J

    A New Hypothesis for Viral ME Symptoms

    I have had this illness for 30 years now and have suffered many of the side effects. I have, however, not gotten many colds or flu in that period. I used to get at least two colds a year, but don't remember the last time I was sick. My wife has been sick many times and I haven't caught anything...
  18. J

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    @mohawk95 One of the things I have learned during my 30 years of illness is that doctors are terrible at diagnosing. I had at least five doctors over the years prescribe antidepressants for various symptoms. My cardiologist thought that my 80/50 blood pressure and 50 pulse could be fixed with...
  19. J

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    @Mohawk1995 Your belief in the antivirals actions is very interesting to me. Back in 2008 when I was taking Valcyte I was suffering from very low blood pressure and pulse among other problems. I took daily BP and pulse readings during the 10 months I took the Valcyte and put this information...
  20. J

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    @Learner1 I have been diagnosed with both coxsackie and echo enteroviruses. I just checked the www.enterovirusfoundation.org/overview website to see what is new in the treatment department and all it says is that they are working on it. I had the opportunity to talk extensively with Dr, Chia...
  21. J

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    @Learner1 I am familiar with the smouldering virus theory, but I need a doctor and an insurance company to go along with it. If a test were available that would allow my doctor to write a prescription that would go a long way toward my goal. Is this a theory or a proven possibility? I had a...
  22. J

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    @Learner1 My ME/CFS started with a cold back in January 1991. Since that time, I have read and studied every piece of information that I could find. Every time a new idea came along, I was trying it. I have tried almost all of the supplements in the above mentioned report at one time or other...
  23. J

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    @Svetlana82 I had many improvements from my 10 months on Valcyte. When I started my blood pressure had dropped to 80/50 and my pulse had slowed to 50. I couldn't stand up without getting very dizzy and I was afraid to drive. I was taking a blood pressure increaser at the time and that helped a...
  24. J

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    @Treeman, I believe that you are mixing up Valtrex and Valcyte. It has been 12 years, but as I remember the dosage for Valcyte patients is 450 mg twice a day. Dr. Lerner used both drugs as conditions warranted. Valcyte is a very expensive drug, Walmart will sell you a months worth, 60...
  25. J

    7 hours remission after subc heparin

    It has been 10 years now, so my memory may be a bit foggy, but I self injected heparin after suffering a pulmonary embolism. As I recall I had to self inject multiple times a day for at least two weeks. I noticed no changes to my ME/CFS during this time. My blood was quite thick and I have...
  26. J

    Did Dr. Lerners patients who improved on high dose Valtrex all have positive EA?

    I attended a conference in 2008 where Dr. Lerner was a part of a round table discussion. He used both Valtrex and Valcyte on his patients, and when asked how long he kept the patients on the drugs, his answer was" until they were 80% recovered". He stated that at the time he had one patient on...
  27. J

    I have had CFS for 6 years and my wife just developed it too

    It certainly would be great if someone could figure this out. I have been ill for very close to 30 years and my wife is fine. My father and his brother both had severe ME/CFS and both had their lives shortened by it. Whatever is causing this illness must be complex, I believe that we would have...
  28. J

    NZ team reactivate research into DRACO (renamed VTose), the universal antiviral that could cure ME/CFS

    @godlovesatrier One issue with EBV that seems to be true is it's almost impossible to eradicate if your having an immune issue or disease. So maybe not surprising if Draco struggled with it in practice, but who knows. I know valtrex and valcyte are meant to eradicate at high doses over 2 or 3...
  29. J

    Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, Paper Pub. 4/1/20 - Dr. Prusty

    @Pyrrhus I thought that I had remembered someone on this site talking about this. I am sure that you are correct in what you are saying, but I would like to get an additional opinion from someone that has tried this. Valcyte is an expensive drug and I was fortunate to have a doctor that would...
  30. J

    Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, Paper Pub. 4/1/20 - Dr. Prusty

    I am one who has had great success with Valcyte. I took it for 10 months back in 2008 and have written about my improvements on this site several times. Since then, the cost had dropped considerably. The improvements have lasted for 12 years and now I am wondering what would have happened if I...