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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. L

    How long before low dose naltrexone works?

    Thanks everyone. I will take it slow. How long before anyone had good results on LDN?
  2. L

    How long before low dose naltrexone works?

    Hi, I am going to be trying low dose naltrexone, 4.5 mg. How long should I take it to give it a fair try? I have a month's worth. Thanks!
  3. L

    chronic sore throat

    I have CFS and with it I have a chronic sore throat. Its probably some kind of imflammation problem.Talking makes it worse. Its driving me nuts. Does anyone know what to do for this? I tried throat lozenges, tea, gargling with salt water.
  4. L

    How much back to school will ticket to work allow?

    I have CFS and am on disability. I would like to get back to work, but could only handle part time at most. I have a college chemistry degree, but need a degree where I could get part time. So I was thinking of health care, a 2 year degree in physical therapy assistant. Does anyone know how...
  5. L

    kineseotape help for interstitial cystitis/irritable bladder

    This post is to help anyone with bladder pain. My daughter has interstitial cystitis (and CFS). My wife is an occupational therapist and put kineseotape on my daughter's bladder area and it greatly reduces her bladder pain and even helped her get through the night without having to pee. She put...
  6. L

    ticket to work question

    Thanks everyone-very helpful and supportive!
  7. L

    ticket to work question

    If I contact an employee network or my states vocational rehab about using my ticket to work, does this notify social security? I want to explore if there is anyway I can try to earn some income, but don't want to bring unwanted attention or trigger having my case reviewed by social security...
  8. L

    DMSA chelation and candida

    My daugher is 18 and has CFS. She has a history of candida, but we have that under control. Her doctor wants to treat her with oral DMSA to chelate metals. My daughter is very sensitive to supplements and meds. Will DMSA (being a sulpher compound) cause candida to come back? Also, I've...
  9. L

    Anyone try a cleaner alternative to equilibrant?

    Thanks John. How many of the white tigers do you take per day? (equilibrant is supposed to be 6 per day but it is not pure sophora root extract oxymatrine like the white tiger).
  10. L

    Anyone try a cleaner alternative to equilibrant?

    My daughter has CFS and Dr Rey in Miami put her on equilibrant for cocksackie B virus. I noticed the equilibrant contains yellow and red dyes, as well as carnuba wax (car wax) and calcium carbonate (tums which lowers sstomache acid). She has interstitial cystitis too which can be really...
  11. L

    Ozone-UV IV therapy safe?

    I found out that its called MAH, major auto hematherapy and is often done with ultraviolet blood irridation at the same time. Researching it is like everything else...some say its totally safe and other articles say that the IV method is not safe.
  12. L

    Ozone-UV IV therapy safe?

    He says the way its done is to run her blood through a 20 ml tube that exposes it to UV light and ozone. They don't use hydrogen peroxide. They do this quite a bit in Europe. She has high HV6 and also cocksackie B viruses so hes thinking this is a safe way to treat those. Thats all I know about it.
  13. L

    Ozone-UV IV therapy safe?

    My daughter is 18 and has CFS. Her doctor wants to do ozone -uv IV therapy on her. He says its very safe. Does anyone have any experience or know about the safety of this? Thanks.
  14. L

    Best antibiotic if needed for people with candida history

    Thank you Sushi and Heapsreal. I will follow up on your advice. So glad for the support here and fast response.
  15. L

    Best antibiotic if needed for people with candida history

    I found out that they will be using vbrsed (benzodiazopine) and epinephfrin for anesthesia. Muscle relaxants and histamine releasers are supposed to be bad for CFS. I don't know what class these are. Anyone have experience with these?
  16. L

    Best antibiotic if needed for people with candida history

    uxmrv-My daughter is really sensitive to most supplements and medicines so Im concerned about the anesthesia. What kind of terrible reaction did you have and what can I do about it just in case? Also, the periodontist gave her peridex mouth rinse which she will rinse with twice a day after the...
  17. L

    Best antibiotic if needed for people with candida history

    My 18 yr old daughter has CFS and also has been fighting candida. We finally got the candida under control, but now she has to have 2 wisdom teeth out (They are causing pain and moving). The periodontist understands that an antibiotic would be bad for the candida but wants her to have a backup...
  18. L

    Should I postpone Dr. Rey visit?

    Thanks Sushi. I called and they are not taking any new patients right now. They said I could either keep the May appt or move it to September (that was the only slot open for existing patients). I guess we'll keep the appointment.
  19. L

    Should I postpone Dr. Rey visit?

    I have my daughter booked to see Dr. Rey at the Klimas Miami Clinic May 1, 2013 for CFS. She also has candida for the past year and we have not been successful getting rid of it despite being on the anti-yeast diet, ect. We are getting ready to do a candida treatment which would probably take...
  20. L

    has anyone tried viusid, immunocet or collustrum for CFS?

    My 18 year old daughter has CFS. She met a girl who got better taking immunocet and viusid which are natural immune system modulators. Also I have read that collustrum can help CFS. Has anyone tried these things? Do they work? Are they safe?
  21. L

    D-mannose cure candida?

    Has anyone experience or heard of using d-mannose to cure candida? My daughter has had a bad case for a year now (along with CFS for 2 years). Last week she had what we thought was a urinary tract infection so we gave her d-mannose five times a day for four days. She has been on the...
  22. L

    Davinci candida protocol?

    Has anyone tried the davinci candida protocol? My daughter has CFS and candida. This protocol uses sanum homeopathic remedies to convert the patheogenic form of candida back to its normal dormant form. http://www.naturaltherapycenter.com/pages/Candida-Treatment-Protocol.html
  23. L

    anyone have burning, aching legs?

    Its good to know that people care enough to respond. Thanks everyone for your support-made me feel better. My CFS doc says to exercise my legs and build up endurance. That hasn't worked out for me. Pacing and rest are what helps. Tryed to push through it yesterday and my legs hurt so bad I...
  24. L

    anyone have burning, aching legs?

    I have had CFS for over 6 years. My legs, especially lower legs ache and burn like I have run a marathon after only being on my feet for 10 minutes. Its getting worse. Does anyone have this symptom? Any suggestions on what to do about it ? Right now, I just have to pace myself carefully. Thanks.
  25. L

    Candida doctor

    Can anyone please recommend a doctor who knows how to treat candida in the central Florida area? My daughter has it bad for a year now. We are at our wits end. She also has CFS. Thanks
  26. L

    NEI Clinic in Coral Gables, FL

    There is a place in Coral Gables, FL called NEI. It seems to be both a research and clinical facility. Has anyone been there? Does anyone know their protocol for treating CFS? Thanks!
  27. L

    CFS Dr. in Orlando?

    Thanks for your responses. We went to see Dr. Hudson in winter park. He is caring and dedicated. However, I would recommend strong caution about going to see him because he wil put you on the stratton protocol. This uses both antivirals and antibiotics. The antibiotics gave us candida so badly...
  28. L

    autism and CFS in family tree

    I have CFS. We also have autism and aspergers in our family tree, so I wonder if CFS and autism are related at the genetic level. Does anyone else have CFS and autism/aspergers in their family tree?
  29. L

    CFS Dr. in Orlando?

    Does anyone know of a doctor who is knowledgable and treats CFS in the Orlando, Fl area? We plan to see Dr. Klimas in Miami in May, but it would sure be a great help to have someone in the area to go to.