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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. S

    Mercury poisoning & enteroviruses

    @David Hammond, Many thanks for such a complete reply. You are very kind for this indeed. I visited a biological dentist this week. To my surprise, she said the silver colored things covering my teeth pieces number 19 and 30 are not ammalgams, but other metal-made devices. She was not able to...
  2. S

    Mercury poisoning & enteroviruses

    @Hip, My intuition is that a factor higher than 2 does apply to ME/CFS patients much of which have impaired detox pathways (the baseline is much lower, I mean). On the other hand, my understanding is that you cannot chelate while having a weak natural detox system because chelators are toxic...
  3. S

    Mercury poisoning & enteroviruses

    @Hip thanks for this insight, very interesting!
  4. S

    Mercury poisoning & enteroviruses

    Many Thanks for the study. The immune problem I see more often reported by ME/CFS patients is high CD4 and low CD8, not the inverted ratio I have. And there you have the 'AIDS w/o HIV' thing. And once I discovered a CFS diagnosed patient who was mercury poisoned, and finally recovered saying...
  5. S

    Mercury poisoning & enteroviruses

    Many thanks for your replies. I recently confirmed enterovirus chronic infection (CVB2, CVB4, Echo 30), plus CMV and CPN, and for 6 months I have followed anti-enterovirus therapy with noticeable improvements (Equilibrant, Isoprinosine), recently starting on Epivir. My hair test shows 2.8 in...
  6. S

    Are supplements that bad?

    http://www.cnn.com/2015/02/05/opinion/seres-herbal-supplements/index.html "Second, there are no controls in place, where supplements are concerned, to regulate how we might be biased by conflicts of interest. This is illegal when it comes to pharmaceuticals. Not so with supplements." Can...
  7. S

    Mercury poisoning & methyl B12 sublingual

    Thanks @SwanRonson, constipation dominant. I have experienced a very mild diarrhea after starting methylation support, under the condition that I keep my monotone diet: any slightly changes and constipation comes back.
  8. S

    Mercury poisoning & methyl B12 sublingual

    Thanks for your replies, I have been on B12 methylation support for almost two months with noticeable improvements (must avoid overexertion, otherwise I have a moderate 24 hrs PEM). Since I recently tested positive for 3 enteroviruses (CVB2, CVB4, Echo 30) and 1 or 2 non-identifiable...
  9. S

    Mercury poisoning & enteroviruses

    Hello, I am interested in gathering information or experiences regarding the link between these two areas of inquiry, and I found the paper below, a mice experiment reported in 2012 that suggests, if I am not wrong, that severity of enteroviruses infections might increase when mercury overload...
  10. S

    Is there a light for US PWME/CFS here?

    http://www.nytimes.com/2015/01/25/us/obama-to-request-research-funding-for-treatments-tailored-to-patients-dna.html?partner=socialflow&smid=tw-nytimes&_r=0
  11. S

    Mercury poisoning & methyl B12 sublingual

    Many Thanks for your replies. My current methylation support is 2000 mcg mB12 sublingual & 800 mg folinic acid. Had the star-up effects from the 1000 mcg but not after increasing the dose yet. I feel better now, even though my diet is so strict that it becomes very socially embarrazing. I plan...
  12. S

    Mercury poisoning & methyl B12 sublingual

    Hello, There are different views on this topic. I am in urgent need to know what to do. A week ago a hair test showed mercury & arsenic overload, likely due to ammalgams. I have not started any procedure specificaly targeted to this yet. But my feelings are that this explains (at least in...
  13. S

    Functional test results & a decision I must take

    Thanks @Gondwanaland For magnesium, I supplement with home made magnesium oil (from magnesium chloride) twice a day, transdermal. I noticed huge changes when I started supplementing, 3 months ago (particularly, regarding sunlight/vit D absorpotion) On the basis of this test results I had not...
  14. S

    Functional test results & a decision I must take

    Hello fellow members, As some of you might recall, in my search for health I have mostly followed the enterovirus theory of ME/CFS with partial response to treatment (improving from severe-housebound to moderate-50%reduction of activities), with setbacks. My complete history here and here#8...
  15. S

    ME in the Guardian, as a neurological disease

    Do you have the reference for this? Medical establishment is particular hard in my country.
  16. S

    23andMe business model?

    Some thoughts on why genetic testing could be affordable, and should be even cheaper in the future. It seems to be what economists call a two-sided market / Big data model. Any concerns on privacy...
  17. S

    ME in the Guardian, as a neurological disease

    On the CFS vs ME issue, and denelianism, an anecdote: I went to an hematologist yesterday and this was the dialog: me "Are you familiar with myalgic encephalomyelitis?" Dr "mmmmm ........nnnnoo" me "It's a neurological pathology recognized as such by the WHO since the sixties" Dr "...ok...and...
  18. S

    Patients Taking Valcyte with Imunovir/Equilibrant

    Thanks! Think 2 daily is my dose, but I'll try this week off to avoid tolerance indeed.
  19. S

    ME in the Guardian, as a neurological disease

    www.theguardian.com/education/2014/dec/29/neurological-disease-at-university?CMP=twt_gu
  20. S

    Patients Taking Valcyte with Imunovir/Equilibrant

    @heapsreal Although immunologist prescribed Isoprinosine 3x500 on Mon Wed and Fri only, I am trying with the following: Week 1: as prescribed Week 2: 2x500 on Mon Wed and Fri only Week 3: no Isoprinosine Week 4: as week 1 Week 5: as week 2 Then stop for a month, and re-start afterwards. My...
  21. S

    Update on markers and ...need to explore co-morbidities?

    @taniaaust1 many thanks for taking the time for reviewing my records!!! As to SNPs (re: MTHFR) I started methylB12 sublingual yesterday and plan to add folinic acid in a few days, as a first approach to improving methylation, as suggested by my GP. Anyway, I plan to take the 23andME and the...
  22. S

    Update on markers and ...need to explore co-morbidities?

    @halcyon how did you make the link nail ridges - Selenium deficiency? I have been supplementing with 300 mcg seleniomethionithe daily for 6 months with noticeable effects in other symptoms (e.g. Brain fog, headaches) but nothing noticeable regarding nail ridges.
  23. S

    Update on markers and ...need to explore co-morbidities?

    I took this from another thread by the late RVK: http://forums.phoenixrising.me/index.php?threads/esr-always-low-in-me.19139/ The sed rate can be either high or low in ME/CFS. If a person's blood is hypercoagulated, and that dominates, the sed rate will be low, below 4 or 5 mm per hour. If...
  24. S

    Update on markers and ...need to explore co-morbidities?

    I am not sure but wouldn't you expect an indication of chronic inflammation, so what can you think when in spite of symptoms, no inflammation marker shows up?
  25. S

    Patients Taking Valcyte with Imunovir/Equilibrant

    Too soon to evaluate yet. Started Equilibrant in August, added Astragalus in October, added Isoprinosine in December. The only one ordered by a MD was the latter (so far, the less effective from the symptoms point of view) Best, S.
  26. S

    Patients Taking Valcyte with Imunovir/Equilibrant

    @heapsreal I've been on Equilibrant for 5 months up to 2 - 1.5 dose, and adding Astragalus once every three days has really made a difference for me. More than that > autoimmunity, but less > more ME symptoms.
  27. S

    Update on markers and ...need to explore co-morbidities?

    @halcyon thanks for your reply; actually a doc. like this one will be helpful in your consultation with Dr. Chia, are not you seeing him by January?
  28. S

    Asking for Help in Understanding Immune Panel (Lymphocyte) Results

    @Jonathan Edwards my CD4/CD8 ratio has been for a year well below the 1 range (0.56) and my NK cell count is 25 with a normal range starting in 55. You said "If NK cells are absent that is a different matter". Could you please try to explain me whether I should be concerned beyond ME/CFS or...
  29. S

    Update on markers and ...need to explore co-morbidities?

    Hello, If anyone might be interested and has the time and energy to give me a feedback, I drafted a summary of my hypothesis, symptoms, protocol and tests performed so far, which is available here (#8). While preparing this document I realized that beyond the not-that-rare markers for a PWME...
  30. S

    Could this be of help in the research for ME/CFS?

    time.com/3634732/ibm-ebola-cure Maybe ME/CFS resaerchers lack enough data processing capacity? Any insights?