• 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. A

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    Dr. Ron Davis in the OMF's last email said he found BH4 Deficiency in ME/CFS as the likely culprit it has also to do with carbs, Meat protein & one of the treatments is Folinic Acid 10-20mgs daily with other supplements there is no Cure but teatments are used with strict diets. This was from his...
  2. A

    Unfolded Protein Response and A Possible Treatment for CFS

    Yes, I agree with things he mentions but also aside from mutations mentioned we still have countless Vascular abdomen compressions like a few being MSA/Nutcracker/Pelvis Syndrome even Mals that require surgeries like AT's or a kidney removal
  3. A

    Unfolded Protein Response and A Possible Treatment for CFS

    To me, all those items suggested at the beginning would be impossible to use if someone has MTHFR folate issues they likely contain numerous flour additives or others not allowed. Also, my homocysteine has always been low normal range number 5 never elevated as this person mentions. If I used...
  4. A

    Great News on upcoming treatement

    I also found something else a rare genetic illness may not be rare after all it is called Fabry Disease. I came across this in an autopsy paper the Man had compression Mesentera/Aorta veins and he also had Fabry Disease diagnosed
  5. A

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    I did see an autopsy report a Guy with mesentera compression in abdomen & his aorta vein undiagnosed, he also had the condition Fabry Disease diagnosed a genetic illness there are child onset or adult onset it runs in families
  6. A

    Managing Potassium Deficiency - Share your experience

    Not sure if I posted here what I have found causes profound daytime fatigue and would also explain stomach compressions vascular nutcracker/mesenteric syndrome I did the alpha-gal meat allergy tests the results were negative but went back to look at my results my alpha-gal is very low...
  7. A

    Something exciting is coming in November

    Bubbling with some possible excitement in December: I went over my old alpha gal meat allergy tests & all were Negatives. I noticed that my Alpha Gal test was very low almost non existent it is not supposed to be so low so like an idiot I searched I found out that low AG anything below 1.2 is a...
  8. A

    A treatment that helps me tremendously

    If someone is helped by the Sun or even Vitamin D3 Gel forms they could have MS all along & is missed on testing. Ron Davis says as many as 25 to 30% have MS he mentioned this in London I think his last conference there by doing some pcr & other tests in his lab. Vitamin D3 also can be...
  9. A

    Reporting improvement.

    I may have found my cause of my illness aside from an enlarged kidney. I went back over all my alpha gal meat allergy tests all were Negative but I searched to why my Alpha Gal Alpha Galactose-Alpha Galactosaide was so very low & non existent. Anything below 1.2 AG is indicative of FABRY...
  10. A

    Managing Potassium Deficiency - Share your experience

    I did the alpha gal syndrome panel I was Negative to all meats but after going back now & reviewing my results the Alpha Gal which is Alpha Galactose or Alpha Galactosaide is very low like non existent. I looked & found out that if the AG is below 1.2 mine was 0.01 it means I most likely now...
  11. A

    Managing Potassium Deficiency - Share your experience

    @TinaT, what diagnosis do you have now aside from CFS? Is this related to Franconi Syndrome at all? Crystals in the eyes? Low Potassium? Sun issues eyes? Are all Franconi symptoms
  12. A

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    Franconi Syndrome can also come with Crystals forming in the eyes seen by eye specialists who use eye drops & medicines. Kidney transplants later are required & check always potassium levels
  13. A

    Something exciting is coming in November

    The Doctor in the UK had also TB Latent form I guess passed on from Birth. Also, APS antiphospholipid syndrome blood clotting can go with compression syndromes. The National CFIDS Foundation published another paper with Seymour & Mothersill back in April on radiation sickness they also mentioned...
  14. A

    Something exciting is coming in November

    I also forgot to mention TOS is also a compression syndrome & some also have Pineal Gland Cyst Tumors as well & need Surgery. So, TOS, ES & all the stomach compressions
  15. A

    Something exciting is coming in November

    Eagle Syndrome is also part of the compression Syndrome disorders & related to the stomach ones & kidney compression can be SMA & the Aorta or Aorta & the Spine compressions. Countless have both ME/CFS/EDS combined they all overlap The best video is The Girl with SMA Syndrome youtube
  16. A

    Something exciting is coming in November

    No point apologozing I am just trying to make everyone know there are countless complications in ME/CFS/EDS & many recovered from specific surgeries/procedures I understand where you are coming from now with all of this. One Woman sick 48 years she got well with a diagnosis of HFI Hereditary...
  17. A

    Something exciting is coming in November

    I wanted to reply to this, if she responded to Vitamin C the likelihood is she had a vitamin C deficiency from HFI Hereditary Fructose Intolerance, illness not EDS. A paper Published called Doctor, why is my son so tired? he was deficient in vitamin C he needed iv vitamin C & Pills he had...
  18. A

    Something exciting is coming in November

    One cannot change blocked veins or fix pineal gland cyst benign tumors removals with Crisp, the kidney is compressed blocked & spinal fluid leaks or scoliosis. There is no virus, no mold as any cause
  19. A

    Something exciting is coming in November

    Jen Brea was told she had EDS Hypermobility then another opinion Doctor said she did not have EDS. I feel she has EDS& I believe Ron Davis's entire Family has EDS Hypermobility he has not been well since a child & why he went to Medical school his daughter is now also diagnosed with EDS...
  20. A

    Article A Gut-Immune-Energy Model: Pt. II – The Armin Alaedini Interview

    I see so many patterns now some have SMA/Aorta others have Aorta/Spine compressions. Has anyone ever looked for a Gist tumor in you it can act like NC or SMA? A YouTube video called 13-year Mystery Solved---Mystery Diagnosis it was part 1 or it comes up also as The Stomach Ache she had a Gist...
  21. A

    Article A Gut-Immune-Energy Model: Pt. II – The Armin Alaedini Interview

    The best YouTube video I saw was on The Girl with SMA Syndrome---Discovery Channel---Banijay Science from 4 years ago... Her heart was failing her she underwent 8 hours of Surgery they also told her she had IBS and then anorexia. She saw a specialist Radiologist she drank barium for an upper...
  22. A

    Something exciting is coming in November

    We need competent skilled Radiologists and Surgeons, it is likely structural instead of bio-weaponry or toxic useless medicines for profits & No pathogens have ever been discovered, all speculations...Patents for profits is what I am seeing now
  23. A

    Something exciting is coming in November

    Why do I show a left enlarged kidney lopsided, is it blocked? SMAS/Nutcracker Syndrome, also is the vein stuck between my spine & my aorta or between my SMA and aorta? My heart aorta shows a dilatation ascending like an aneurysm does. The aorta runs up beside the spine area. Why do I show 2...
  24. A

    Story: After long lyme disease when patient was ready to die this happend...

    Many people have bacterial infections, it does not always mean it is Lyme other infections can cause similar bullseye... Bee venom kills numerous infections even fungus bacteria virus. The stings may have given her some kind of epi pen response triggering her heart to function properly again...
  25. A

    Something exciting is coming in November

    Aidan is also trying to figure it all out LOL
  26. A

    Something exciting is coming in November

    Turn on YouTube now & watch the second part of the video called The Girl with SMA Syndrome it also explains the special Radiologist & xrays drinking barium procedures then we all will go to a Beach & drink some beers & write some tell all Books LOL
  27. A

    Something exciting is coming in November

    @Quilp, It is all about the OMF Clinical trial on those 2 medicines that was what Linda told me in an email & also I saw they posted that Ron Davis just published a paper on MS in ME/CFS so No no major breakthroughs
  28. A

    Article A Gut-Immune-Energy Model: Pt. II – The Armin Alaedini Interview

    Maybe it is the lactic acid D test Avenger had done & got well with a low carbs fiber/no fiber, antibiotics with baking soda combined. He is in remission now
  29. A

    Ongoing research: Identifying viruses in tissue and nerve samples from ME/CFS patients

    I just saw some MRI Contrast Scans she had compression of her Spine with the renal vein & aorta vein, it was different to the aorta & renal vein & the SMA vein. Rufous, see Jayne Flanders post 5 hours ago on Facebook, Renal Nutcracker Syndrome Support Group she had numerous MRI Contrast scans...
  30. A

    New Book about Thirst in ME/CFS

    @crussher, a vasoconstrictive state to me sounds 100% like compressed veins in Nutcracker syndrome. I saw one woman today her MRI Contrast showed she has a renal vein compression between her spine & the aorta not between the aorta & the SMA Vein