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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. L

    Ptosis/drooping brow.

    I have this condition and, like Scarlet56, I have traced it to a HV related neuralgia in the cranial nerves around my eyes. I have had nerve blockers in my supraorbital and trochlear nerves which make the swellin, drooping and discomfort go away. However, this is not a viable treatment because...
  2. L

    Alternative Ways of Administering High Dose Vitamin B12

    I wonder if the swab is effective because it is hitting the base of the spheno ganglion nerve? https://www.diamondheadache.com/treatments/nerve-blocks/sphenopalatine-ganglion-nerve-block/
  3. L

    Bacteriophage therapy (phage therapy) for gut infections / dysbiosis — just $30 instead of $1200

    I wonder if there is a phage discovered for E. Gallinarum bacteria. Does anyone know? This bacteria was just discovered go be tied to autoimmunity https://www.sciencedaily.com/releases/2018/03/180308143102.htm
  4. L

    Shingrix adjuvant QS-21

    I am trying to decide whether or not to get Shingrix. I have a prescription for it, but I am not sure if I should follow through with it. Shingrix is not live Shingles. It is a new vaccine that contains an adjuvant QS-21 which is said to stimulate T cells. On one hand, I believe much of the...
  5. L

    Does anyone else experience a quiet ticking noise when their head pressure is releasing?

    That also sounds related to cranial sutures, from what I have read, although the idea that adult cranial sutures are not fully fused is very controversial, apparently.
  6. L

    Does anyone else experience a quiet ticking noise when their head pressure is releasing?

    This is kind of late, but I just noticed the thread. Fogbuster, did you have orthodontic work when you were growing up? Did you ever have teeth taken out? What you are describing sounds like you cranial bones shifting a little bit, which is normal. This might be related to an underdeveloped...
  7. L

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    Hi everyone, I haven't posted on here for a while. I had a great response to NAG when I first took it, and miraculously it helped my sinus issues, particularly the swollen and tender eyebrow area, too. I wanted to post because the NAG lost a bit of effectiveness and I was concerned it would make...
  8. L

    Don't Get Your Thyroid Out...Ever. Leave It In Until It Kills You.

    Hi everyone. I just wanted to share about when I was once on really high doses of T3 as well. I was also on adrenal cortisol meds, too. I had high reverse T3 and antibodies for hashimoto's (I still have those). The high T3 (I think I was at 75 mcg at some point) made my heart rate really high...
  9. L

    DCA(Dichloroacetate)

    I wanted to resurrect this thread bc I just bought some of this online and wanted to try it. It's powder.I can't see Rich's initial post. Does anyone know much about DCA? I am taking it because tests have shown that I have D Lactic acidosis.
  10. L

    DCA Sodium Dichloroacetate

    Hi everyone, just curious to hear if anyone new has tried this. It is being sold on amazon as a supplement. I am interested in it because I have read it helps with D-lactate acidosis. Is it safe to use, though? It's hard to tell... Liz
  11. L

    Baking soda

    Yes, I read the info that Alex posted which I found very interesting. I wonder, though, if my issue stems from D-lactate in the gut, is that a different issue than lactate that results from cell metabolism issues, which might account for PEM (i don't have that symptom). If the causes of high...
  12. L

    Baking soda

    Also, how much should I be taking if my issue is D-lactate from my gut?
  13. L

    Baking soda

    I have tried baking soda and had a strange effect where one day I have taken it I felt great, then the next day I felt really tired and brain fogged. I am not sure why that is. Should I keep taking it? A few years ago a test showed that I have very high D-lactate levels in my gut. So maybe I...
  14. L

    New Daily Persistent Headache, treatment and causes

    One additional thought: have you seen an eye doctor? The reason I ask is that the symptoms you are having in your right eye sound like they could be shingles. My sister had that, and didn't know what it was. The eye doctor diagnosed it. There are some new stem cell treatments you can try if you...
  15. L

    chronic frontal sinus inflammation

    Thanks! Yeah, I have had some good results by cutting out gluten, dairy and sugar (when I can). I will look into the medication side effects. It's a good idea. The thing is, this sinus issue was the first and continues to be the most prominent symptom of my CFS. I got really sick with "the flu"...
  16. L

    benagene Oxaloacetate supplement

    Thanks! I have read the thread, which is helpful, but I am still not sure if anyone knows if I should stick it out with the benagene. Like, does it take effect over time? Or if I feel bad initially should I ditch it?
  17. L

    New Daily Persistent Headache, treatment and causes

    I have bad frontal sinus headaches for years, which sound kind of similar to your issues, although the symptoms are a little different. I feel like my frontal sinus headaches are autoimmune or immune reactions to lyme or hv2 (I have both), maybe. For me the only thing that helps is...
  18. L

    chronic frontal sinus inflammation

    Hi Geraldt52, Good idea checking into the side effects of the meds. However, I don't have sinus congestion. My sinuses are actually clear, they are just inflamed and tender and cause headaches and pressure. very now and then I have infections, but mostly not. I think it is some kind of...
  19. L

    chronic frontal sinus inflammation

    Hey everyone--short update. I have tried everything in this thread and nothing works, sadly. The only thing that works for me seems to be large doses of pseudoephedrine and supplementing estrogen sort of helps too. Maybe there is a brain-sinus swelling thing going on which has a complicated...
  20. L

    benagene Oxaloacetate supplement

    Hey everyone, I have read threads where oxaloacetate supplements are mentioned for reducing glutamate levels in the brain. I have been taking benign for a week now. I am having some beneficial effects, in that I feel a little bit less weak in general, but it seems to be making me frontal sinus...
  21. L

    hypothalamus extract

    Thank you for the report. Bummer that the HPA stuff did not work. I ordered some, so I guess I will give it a try. I wonder why the brain supp worked but not the other glandulars for HPA axis.
  22. L

    hypothalamus extract

    Thanks! I tried a search but maybe I will try different terms.
  23. L

    hypothalamus extract

    I realize this post is four years old but I am investigating this treatment as well and came across the same reviews. Has anyone tried hypothalamus extract? I am curious how it affected you, if so? Thanks
  24. L

    New DNA treatment for HIV-possible implications for other latent viruses?

    http://www.dailymail.co.uk/sciencetech/article-2701304/Scientists-delete-HIV-virus-human-DNA-time.html
  25. L

    Rocephin shots

    I did get a boost in energy. Basically anytime I have improvements with neuro, I have some energy improvements as well. But I feel the need to emphasize that for me the benefits of Rocephin are temporary. I just started shots again and I did see improvements with the first shot, but after the...
  26. L

    Rocephin shots

    When I had the shots I noticed a little bit of pain on the upper right side of my abdomen, basically where the gall bladder is. Then my doc told me that about the gall bladder issue with Rocephin. I mentioned I had some pain after getting the Rocephin shots and he put me on a prophylactic med...
  27. L

    sheep placenta

    Update: I was feeling so horrible that out of desperation I started taking this stuff again, but this time at a very low dose. The day I took it I started feeling better. It has made an overall positive difference, except now I am not sure if that is bc I had grown dependent on it before. At any...
  28. L

    Rocephin shots

    It's worth noting that Rocephin can cause damage to the gall bladder. My doctor said that some of his patients had to have their gall platters removed after taking it for a while. My gall bladder ached after my first dose, in fact. My own Rocephin treatment benefits started to wear off over time...
  29. L

    sheep placenta

    I always thought placenta was one of the main ways that the baby in utero gets nutrition. Then the job is transferred to breast milk maybe? But I am not sure. Maybe someone else can chime in. Yeah, I sometimes think I should take it again for my skin but my concern is in the ethical side of it...