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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. RestingInHim

    Discount Prescription Drug Cards/Coupons???

    Just realized the drugs on this website come from Vanuatu. That concerns me regarding the safety of the drugs. Have you ordered from here?
  2. RestingInHim

    Discount Prescription Drug Cards/Coupons???

    Yes! Thank you, Ema! Should have asked months ago!
  3. RestingInHim

    Discount Prescription Drug Cards/Coupons???

    Not sure if this is right place to post this...or rather ask for help...but seemed the most appropriate. I've been on the generic form of Epivir (lamivudine) for 3 1/2 months now at the cost of roughly $400 per month. When I saw Dr. Chia yesterday he said I should be able to buy it for 30% of...
  4. RestingInHim

    Dr. Chia's treatments

    Hi Matt! Have you tried calling Dr. Chia's office? They are always very helpful and will know how to direct you. As a patient of his I have realized it is unwise to take Equilibrant, or any other immune modulator, prescription or not, without monitoring by a physician. But Dr. C's office can...
  5. RestingInHim

    Dr. Chia's treatments

    Dr. Chia does have some patients have stomach biopsies. I believe that because of more sophisticated blood tests, by the right labs, which reveal enterovirus infections, biopsies are not as necessary. He is very sensitive to the needs of his patients...not wanting to do anything unnecessary...
  6. RestingInHim

    Dr. Chia's treatments

    Bet that was Patrick's blog....http://quixoticmeblog.blogspot.com Anyway...just curious Dr. C said inosine is in immunovir. He didn't say, but I imagine it has to do with cost. If immunovir is as expensive as Epivir...which is about $400 / month. Inosine is over the counter and he gave me...
  7. RestingInHim

    Dr. Chia's treatments

    That was my post on Health Rising to which you had link. Yes, Dr. Chia is continually doing research, including patient responses to treatment. Here is link to his EVMED. http://evmedresearch.com/index.php Has great laymen's terminology re ME/CFS as well as his research.
  8. RestingInHim

    Dr. Chia's treatments

    Hi Heaps! Thanks for the link to my blog. Epivir is an antiretroviral used to treat HIV/AIDS. There is no antiviral specifically for enteroviruses, so Dr. Chia treats with various antivirals. Though Dr. C is continually doing research, I am not certain Dr. Chia is working on an antiviral...
  9. RestingInHim

    Equilibrant

    ttt, I would encourage you not to increase it too quickly as the effects can sometimes hit several days after taking it. I wish you the best with your trial of Equilibrant. It continues to be for me the best help I have received! Pressing on...to enjoy The celebration of the Savior's...
  10. RestingInHim

    Equilibrant

    Here's my latest blog entry on Health Rising http://www.cortjohnson.org/blog/2013/10/04/death-family-diverticulitis-immune-modulation-seeing-dr-chia-4/ I've shared a lot of this on this thread already but this has more info. Hope you find it helpful. Resting...through the changes
  11. RestingInHim

    Equilibrant

    Thanks, Pittsburgh Dr.Chia didn't tell me to pulse my dosage, but I will be a calling in in a couple of weeks because I'm not sure how far I am to go with increasing inosine and decreasing Equilibrant. He said if I get flushed I should separate the two by 2 hours. My blood tests showed my...
  12. RestingInHim

    any cfs doctors in AZ or CA ? thank u

    Dr. John Chia...Torrance, CA. There's a thread about him.
  13. RestingInHim

    Equilibrant

    I've been out-of-the-loop. My brother died suddenly July 19. My family and I are still absorbing the shock. Given my health issues, I am so grateful I was well enough to stay with my parents (who are 85 & 87) for 2 weeks and then plan a family memorial. After the memorial, I got immediately...
  14. RestingInHim

    Comment by 'RestingInHim' in 'Seriously?'

    I'm glad you got my rant, Jacque. Love your sarcasm. If I believed there was anything I could do to change this, I would do it. Right now, I'm just trying to stay vertical some part of the day. And expressing a rant once-in-a-while to others who understand feels cathartic. I do agree with...
  15. RestingInHim

    Equilibrant

    Great news, Pittsburg!! : ) Would like to know what other vitamins you're taking?
  16. RestingInHim

    Seriously?

    I saw a commercial on television the other day for feline leukemia awareness week. Seriously. Let's see....when was the last time I saw an advertisement for ME/CFS Awareness Week? Like....never! And who, besides those who have ME/CFS, is aware there IS a ME/CFS Awareness Week? Well, after...
  17. RestingInHim

    Things people say to people with ME that don't help and sometimes discourage.

    ....and the responses we restrain. "GET SOME REST". This depends on your definition of "rest" and the timing of the comment. > If in the midst of a crash...when we are debating if risking a shower today is worth it...or even possible...and, though we are forced into a horizontal...
  18. RestingInHim

    Equilibrant

    I had my 3rd appointment with Dr. Chia last week. I've been taking 5 Equilibrant per day (2 1/2 am & pm) for 3 1/2 weeks after lowering it from 6 to 5 to 4 then back to 5. He said I am progressing well and to stay on 5. I have been doing very well with only 1/2 day crashes about once-a-week...
  19. RestingInHim

    Equilibrant

    I am so glad you are doing better! I just realized last night my Dr. C appointment is May 2...in 10 days. Your mentioning daily naps is a wake-up call (is that a pun?) to me. I am having a very hard time getting the rest I know I have to get so I won't have a major set-back...as Dr. C warned...
  20. RestingInHim

    Equilibrant

    WOW! Thank you for posting this! I didn't realize you had been ill for 7 years...and can't believe it took 6 years for you to get a diagnosis! This 4-part program is short but thorough. I'm sending the link to some friends....something I rarely, if ever,do! Thanks for helping to put a...
  21. RestingInHim

    Equilibrant

    Can't believe it's been a month since I posted here. It's been a good month and a full one! I went down to 5, then 4 1/2, then 4 Equilibrant. I didn't do as well on 4 1/2 and did worse on 4, so am back to consistent dosage of 5. This may be my optimum dose. I see Dr.C this week. I'm...
  22. RestingInHim

    Question about Dr Chia's stomach biopsies

    He didn't have me do a stomach biopsy because my blood tested positive for enteroviruses and the biopsy wouldn't effect his treatment. He is reluctant to cause his patients to spend time, energy, and money on unnecessary tests and treatments.
  23. RestingInHim

    Anyone seen Dr Neil Nathan in California?

    Absolutely, Dreambirdie! He avoids expensive treatments that have been shown to do little for his patients. He and his son do their research with little or no funding. He doesn't order tests that won't effect treatment. At the highest dose, his Equilibrant is $90 per month. For the person...
  24. RestingInHim

    Anyone seen Dr Neil Nathan in California?

    I haven't read this entire thread, but I can recommend Dr. John Chia in Torrance (LA suburb). He is on my insurance and his office handles all the billing. Though he is an infectious disease (and an ME/CFS) specialist, he only charged my insurance what my internist charges...and Dr. Chia has...
  25. RestingInHim

    Equilibrant

    You might want to ck thread re: Dr. Chia: http://forums.phoenixrising.me/index.php?threads/dr-chias-treatments.20709/page-2
  26. RestingInHim

    Equilibrant

    I gradually increased my dose every 7-10 days, but only after I felt better each time. By the time I saw dr. C on my 2nd appt I had just moved to 6 so I only wound up being on 6 for 2 days. Since my fatigue had increased, even though my pain had decreased...and based on my blood tests, he told...
  27. RestingInHim

    Equilibrant

    I try to watch old movies to distract me. Sometimes it works.
  28. RestingInHim

    Equilibrant

    Yah...I hear you! Not fun. I just lowered my dose to 4 today, which Dr. C told me to do if I did better on 5...so I'm kinda holding my breath.
  29. RestingInHim

    Equilibrant

    So sorry to hear that! Right after i lowered my dose from 6 to 5, I crashed for about 2 weeks. I'm not sure it was related to the lower dose. There were a lot of people around me with various viruses, so it may have been my body responding, even though I wasn't symptomatic for those virus...