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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. D

    Majority of nicotinamide mononucleotide (NMN) supplements contain virtually no NMN!

    Damn. Mine WAS on that list unfortunately :mad: NMN MAX - Got a bottle about 9 months ago. Did not feel well, so stopped taking it. Can't remember the specifics. Have the bottle in the unused supplements cabinet. :(
  2. D

    Foscarnet Protocol for HHV6?

    The dosage recommendations appear to be body weight dependent and may vary depending on the condition they are treating. The example I quoted in an earlier post of this thread recommended 90mg/kg slow infusion( 1 - 2 hrs) bid for 2 to 3 weeks.
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    Foscarnet Protocol for HHV6?

    Japan appears to be ahead of other countries in the use/approval of Foscarnet for HHV6. Foscarnet approved for HHV-6 encephalitis in Japan Much of the HHV6 doing information appears to be related to transplant patients.
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    Foscarnet Protocol for HHV6?

    Hi @Nuno! I have not made any progress on the Foscarnet treatment. In my previous post I had cited a generic dosing regimen that I picked up from Googling Foscarnet dosing. That dose appears to still be valid, but there are other dosing protocols listed for the specific illness they are trying...
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    Björn recovered from severe ME with antivirals (valganciclovir, ritonavir and isentress)

    Yes, lowering the HHV6 titers correlated to symptom relief. Moderate improvements were gained in both physical/bodily energy as well as cognitive processing and reduction in brain fog.
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    Björn recovered from severe ME with antivirals (valganciclovir, ritonavir and isentress)

    Could not keep the titers down when I went off Valcyte. Within 2 months of being off Valcyte, the titers would be back over 1280 again. We tried many different combinations of antivirals with Valcyte, including 2 HIV retrovirus antivirals as well as both Valtrex and Famvir. Also tried the...
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    Björn recovered from severe ME with antivirals (valganciclovir, ritonavir and isentress)

    Yes, I had combined Isentress with Valcyte for chronically elevated HHV6 titers. HHV6 >1280 Ref. <80 Valcyte by itself brought my titer down to range 160 – 320. We were hoping that adding Isentress would bring the titer down to normal range and provide...
  8. D

    SFN without pain?

    I am not extremely familiar with all the SFN symptoms, but those that I am familiar with and which which you mention I am negative for. The following are my results for some of what you mention. The following are the results from the bloodwork. The lab referred to this as their...
  9. D

    SFN without pain?

    I had skin punch biopsies done about three months ago, to be used in a few tests. One of the tests was for SFN. The neurologist was surprised when the results came back as positive for SFN, as SFN was not the primary reason for getting the biopsies. She followed up with an autoimmune blood...
  10. D

    where to get these SNP's done ?

    Agreed, Promethease is the primary tool I use and then sprinkle in other secondary tools and information sources.
  11. D

    where to get these SNP's done ?

    I find this a bit odd, as 23andMe does (or did) run SNPs for MTHFR. I had my test in 2017 and they included MTHFR at that time. Below is a screenshot of my raw SNP data for MTHFR displayed on a 23andMe page. I have 20 SNPs on this gene. Possibly what they meant is that they do not offer any...
  12. D

    anybody knows about MTFR2?

    https://customercare.23andme.com/hc/en-us/articles/360044957274-How-Accurate-Is-23andMe-#:~:text=Each%20variant%20in%20our%20Genetic,tested%20under%20different%20laboratory%20conditions.
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    anybody knows about MTFR2?

    I wouldn't say no value, but limited. I am in the same situation with 23andMe. They state that their calls are 99%+ and they test for 700,000 variants. Assuming this error rate is accurate, it would suggest there could be up to 7,000 miscalls. So I guess you could say that they are “mostly”...
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    anybody knows about MTFR2?

    Hi Trollo, I believe your nutritionist would need to tell you which SNP on the MTFR2 gene they think produces a problem with homocysteine. The SNP would be identified by the RSid (column “Marker (SNP)” from your screenshot). Not having the RSid would be like searching for a needle in a haystack...
  15. D

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    While it appears to be the exception rather than the rule, it is not uncommon. This is one example from a Mayo Clinic study: “Of interest, the plasma PCR was HHV-6 negative in two patients in spite of being HHV-6 positive in the CSF. “
  16. D

    CMX001 Brincidofovir

    I am no expert on this subject but seem to remember reading about this drug very recently. As per my memory(?), I believe that all the studies into the oral version were discontinued due to causing severe stomach (GI) problems. On the positive side, they formulated it into an injectable version...
  17. D

    Brain fog after recovering from Covid could be PTSD?

    In my opinion, this sounds like total BS! They appear to be trying to do the same thing to long covid as they have done to CFS over the last 3+ decades. Trying to make it a psychological/psychiatric disorder.
  18. D

    EBV Test Result Interpretation?

    Thanks for the links! I will be getting input from the doctor in the next couple weeks, after more test results come in. I will post any interesting points. After my wife read your post, she reminded me that the doctor had made the comment that if Montoya saw these results, he would say I was...
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    EBV Test Result Interpretation?

    For the last 10 years I have primarily focused on my elevated HHV-6 titers. 1:1280 Ref. <1:80 Over the last 20+ years I have also had abnormal EBV test results, but the doctors always stated that it is just a result of past infection, even though the...
  20. D

    Low LYMPHOCYTE CD8 count?

    I vacillate between severe and the low end of moderate. All depends on my physical and mental exertion. If I do absolutely nothing for a week, I am low end of moderate. Unfortunately, that's not living, but you all know that already ..... I will post back if I learn any additional information...
  21. D

    Low LYMPHOCYTE CD8 count?

    Yes, low CD8 is typical for me. No explanation.
  22. D

    Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

    I also found his comments on the flu very interesting, as I have not had the flu in 20+ years and I do not get the annual flu shot.
  23. D

    Sudden Supraventricular Tachycardia Attacks

    Until this thread, I had not heard of others with SVT. I get SVT, but for a much shorter duration (5 – 10 seconds). My heart rate jumps from resting rate of 55 – 60 to 190 – 200. Similar to you, my SVT occurs when I am relaxed and sitting or reclining. It’s possible it happens at other times and...
  24. D

    Validation of impaired Transient Receptor Potential Melastatin 3 ion channel activity in natural killer cells from ME/CFS patients

    Hi @Gingergrrl , I really do not have the knowledge and understanding to compare and contrast your illness with that which Is described in this research paper, so please take my comments with a grain of salt. It would appear to me that there may be some parallels between the two, but also a...
  25. D

    Validation of impaired Transient Receptor Potential Melastatin 3 ion channel activity in natural killer cells from ME/CFS patients

    Interesting, thanks for connecting the dots! This seems to tie in neatly with the lactate/cori cycle research being discussed on the other threads.
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    Validation of impaired Transient Receptor Potential Melastatin 3 ion channel activity in natural killer cells from ME/CFS patients

    I found this research update useful in describing the paper in layperson's terms. If I understand correctly, it appears to be saying that proper transport of calcium into the cell is impaired and may be causing ME/CFS symptoms. @Gijs, I am not familiar with the mechanism of calcium...
  27. D

    Big Data App to Explore Genomes for Clinical Relevance, Rare Variants, Drug Response, etc (Free)

    @kday , this is great! The upload/processing took only 54 seconds. While I am still learning the user interface, it appears very easy to use. It brings much of the important information together, which i was previously having to manually jump to other sites in order to research. Thank you!
  28. D

    Mitochondrial disease confirmed!

    I'm not sure if this provides any clarity. Possibly just confirms what you ( @Learner1 & @nandixon ) are interpreting in your earlier tests. My 23andMe was run about 18 months ago and lists both rs2854122 and rs267606893. When I try to search dbSNP for rs2854122 it indicates that they have...