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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. hubcap_halo

    the most effective (non-conventional) lab tests to do to get treatment?

    Methylation Pathway.... PS I assume you are going to consult with rich after doing the Vitamin Diagnostics Methylation Panel Pathway test? I only ask because I don't know of any doctors who can interpret the results other than Rich (Phd:)... Unless the test has changed in the last two...
  2. hubcap_halo

    the most effective (non-conventional) lab tests to do to get treatment?

    The tests you're thinking of are great ones to do. Also test for metals via 24 hour urine challenge. You can do it through LabCorp or quest I believe. Mine was covered by insurance. The most reliable test is a 24 hour urine challenge. Your doctor can inject you with DMPS (will provoke...
  3. hubcap_halo

    TREATING LYME WITH ADDERALL: WILL IT HARM ADRENALS?

    A very smart LLMD said that Adderall was recommended at the 2011 ILADS Conference. For fatigue and pain, I think. But could it damage overstressed adrenals? Ive tried to avoid coffee because of crashes. And Adderrall is a straight-up amphetamine. What has your doctor told you? Safe treatment? Or...
  4. hubcap_halo

    Anyone else face "Notice of Continuing Disability Review"? Let's talk!

    Hi Ahimsa, Thank you so much for the reassurance. This is my 3 year review. I think I got something similar to what you received. About 10 pages, but it won't be that long because 5 or for different doctors/treatments and I only have two...An MD and a psychiatrist so I believe the double...
  5. hubcap_halo

    Anyone else face "Notice of Continuing Disability Review"? Let's talk!

    Hi Tristen, Thank you so much for your reply! Excuse my late response. I'm at my 3 year point, so I believe this is a standard 3 year review. It has more pages than I would have expected, but as far as contacting doctors, they only say they may contact the ones I list for "medical records."...
  6. hubcap_halo

    Anyone else face "Notice of Continuing Disability Review"? Let's talk!

    Hello, I just got the "continuing disability review forms." I'm still sick and disabled like I was when I first was awarded SSDI, but I really need to talk to anyone who has any insight on these forms and this process -- preferably via PM, phone or email. A friend of mine who was...
  7. hubcap_halo

    Dr. Chia & Enteroviral infection: Which virus or viruses is he referring to?

    Thank you so much Good god. Thank you for this incredible link. My friend is printing that article from the Journal of Clinical Pathology and showing it to all his docs and I will show it to my doc! Great work!Thank you.
  8. hubcap_halo

    Dr. Chia & Enteroviral infection: Which virus or viruses is he referring to?

    THANK YOU FOR THESE HELPFUL REPLIES! These were for a friend of mine and he'll be very grateful! Thank you!
  9. hubcap_halo

    Dr. Chia & Enteroviral infection: Which virus or viruses is he referring to?

    When Dr. Chia refers to enteroviral infection, does anyone know which one he means? When I researched enteroviruses, they are numerous kinds. I was wondering if anyone knows. Thanks very much.
  10. hubcap_halo

    Metal detox: King Chlorella? Prime Chlorella? or recommend another quality brand?

    Thanks Vegas. I appreciate hearing the cons of any treatment. I think many become sicker from taking Chlorella because it binds with heavy metals like lead and mercury and thus if taking in larger amounts can cause a lot of detox symptoms, herxing etc.... But basically it's chlorophyll which is...
  11. hubcap_halo

    Metal detox: King Chlorella? Prime Chlorella? or recommend another quality brand?

    Hi Sushi, Thank you so much for the recomendation. I will check out Yaeyama and do some research on it. I know you are a very well researched person and really respect your opinion. I hope you are doing well and would love to hear any updates on your progress. Are you still in Europe working...
  12. hubcap_halo

    Metal detox: King Chlorella? Prime Chlorella? or recommend another quality brand?

    Hi Lou, Thank you so much for doing the extra research and for your recommendation. I will check out PectaSol. $35 for a months supply is really reasonable for a good metal detox supplement. Biopure and other brands are really expensive. Even Nutricology king chlorella is not cheap if you're...
  13. hubcap_halo

    Metal detox: King Chlorella? Prime Chlorella? or recommend another quality brand?

    Hi All, I'm doing metal chelation and taking King Chlorella. My doctor recommends Biopure. I've also heard that Prime Chlorella is good. Anyone else taking these brands? Are there any other metal free, safely grown brands that anyone has found? What I've heard is that it's all about...
  14. hubcap_halo

    Ozone anyone?

    Thank you Shannah. I'm sorry the ozone did not help your family member. It seems so many of these things we try are based on a best guess and then a shot in the dark. But we keep trying and that is good. regards, HH
  15. hubcap_halo

    Ozone anyone?

    Hi Sushi, Thank you so much. So the administration was sub q for you? A friend of mine wants to try it that way. I think ozone is helping and I'm really happy that Hydrogen peroxide helped you, even though you had to endure the die off. That is on the docket for me this summer. The whole...
  16. hubcap_halo

    Ozone anyone?

    Hello, I've been on an upswing due to a mix of treatments, including Ozone--an oxygen therapy similar to hydrogen peroxide, but more gentle and immunosupportive (is that a word?). The IV tech infuses (diluted) ozone into my vein with a push syringe, like a Myer's push. I've experienced an...
  17. hubcap_halo

    Has acupuncture helped?

    Hi, Looking back on my 15 years of ME/CFS-- my best years were years where I was seeing an acupuncturist consistently. Once every week or two weeks. First, I believe the effectiveness depends on the talent of the acupuncturist. I've met some "Westerners" who had delved into acupuncture and...
  18. hubcap_halo

    Peptide Injections

    Any progress, Mikie? + Anyone else know about Peptide Injections for CFS? Thank you Mikie, Would you feel comfortable sharing the name of your PCP? Feel free to PM me if you do not wish to post. A friend and I are VERY interested in Peptides and have located two docs who do it in FLA...
  19. hubcap_halo

    GcMaF Assists Immune Functioning

    Thank you Cort! This is fantastic. Enough hard science and the right length to present to a busy, skeptical doctor and try to get them onboard and write a script!
  20. hubcap_halo

    Know a great doc that (preferably) takes insurance in DC, Maryland or Virginia?

    I've heard Dr. Weiss is a very kind man. I have not seen him. I've been doing the doctor bounce for quite a while, but just today met with the sharpest practioner I've met in a long time, a Naturopath. Does not take insurance. I'm very hopeful and excited. If anyone in the area wants her...
  21. hubcap_halo

    Couple seeks holistic doc & biological dentist in a beautiful, affordable locale

    Couple seeks an holistic doc/treatment center in warm, beautiful part of USA Hello, My Girlfriend and Ihave decided to relocatefrom from the east coast to a more affordable area with a great doctor and some natural beauty. Can you help us find an ideal, and affordable locale for healing...
  22. hubcap_halo

    Minneapolis/Twin Cities area - anyone with a recommendation for this area?

    I second the Dr. Karen Vrchota recommendation. She is wonderful. Top shelf. Knows what every other doc is up to and takes the best from all. Super kind.
  23. hubcap_halo

    Stem Cells

    Ben, Thanks for the update. The few first 2-3 months post treatment must be hard--the months when the Clinic doctors and Cheney say to not expect much, if any, improvement. A waiting game. Good to hear you've reconnected with that old friend. And whenever you hear that Dr. Bell statement...
  24. hubcap_halo

    Know a great doc that (preferably) takes insurance in DC, Maryland or Virginia?

    Thanks Cindy, WOW. Back to work in 3 weeks? Does he take insurance for the distance/phone consults? best, Patrick
  25. hubcap_halo

    Know a great doc that (preferably) takes insurance in DC, Maryland or Virginia?

    Thanks for the reply ggingues. I've poured over those doc lists on co-cure quite a few times. I've seen a few of them. There's one I'd like to see but he doesn't take insurance. $1700 for the initial visit. Yow. I'm hoping there's a doc under the radar that perhaps I haven't heard of. best, P
  26. hubcap_halo

    bottled vs. Filtered water. Thoughts on which contaminants worst for CFS?

    I, in no way, feel overwhelmed by all these choices. Seriously, thank you one and all for so much good info on the best ways to get good water into our bodies.
  27. hubcap_halo

    bottled vs. Filtered water. Thoughts on which contaminants worst for CFS?

    Thanks Sushi. Do you take a specific multi-mineral supplement to replace minerals? Sushi, Reverse Osmosis water seems to be coming up as a very healthy choice. Was a specific supplement that supplies the minerals you need recommended to you? I'd love to know what that is. Thank you...
  28. hubcap_halo

    bottled vs. Filtered water. Thoughts on which contaminants worst for CFS?

    You are wise to get that good quality water and drink it from glass bottles. I hope you can get that under-the-sink filtration system soon.
  29. hubcap_halo

    bottled vs. Filtered water. Thoughts on which contaminants worst for CFS?

    Thank you Dreambirdie. 5 gallon glass bottles! You are a water warrior. I once lived next to a co-op that offered refills of reverse osmosis water and I used glass bottles too. I will look in that filter you are using. Thank you!
  30. hubcap_halo

    Know a great doc that (preferably) takes insurance in DC, Maryland or Virginia?

    Hello all, I'm seeking a smart, open minded, compassionate, out-of-the-box thinking doctor. A medical detective! That takes insurance. (I know, laughs.). And if they don't take insurance, then just a great doc. One versed in ME/CFS would be great, but they don't have to be a "CFS" doc...