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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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Quick answers:
1. Can't remember specifics, but others will chime in. He looks for the enteroviruses which he believes to be the root cause of ME/CFS.
2. No, it is not required.
3. Yes, his recommendations vary according to which enterovirus the patient has, the patient's response to previous treatments, and a keen sense of knowing which drugs will help and when.
He started my son on Equilibrant, added Inosine many months later, then went to work on POTS, at the 2 year mark, after a great deal of improvement, he added Lamivudine, now at the 3 year mark he's added DHQ. Each of these things has helped my son a great deal, well, not the DHQ, we just ordered it and are waiting for it to arrive. My son tried a lot of different things before this, none of it helped.
Other patients are on all kinds of different treatment paths. It does seem that he usually starts with Equilibrant. I was skeptical about the Equilibrant at first, but we figured what the heck and went for it. About a month in, after the initial worsening had passed, it was clearly improving his cognitive function, energy, and his very severe constipation disappeared.
Trying things, guided by experienced clinicians, is all we've got at this point. My POV is that it is worth trying things that seem like they could help without harming. If you can find even a few things that improve your quality of life and function it's a good thing, and later you might find another thing or two. They all add up. Improvements are good.
How did he first present to Dr. Chia, or what were his symptoms at the beginning of his illness?How did your son first present? What lab uses the ARUP blood test, or did he take your son's blood in the office?
Thank you all for your helpful responses.
How did he first present to Dr. Chia, or what were his symptoms at the beginning of his illness?
When we first called to schedule the new patient appointment with Dr. Chia he had us send all pertinent medical records. After he reviewed them and agreed to see my son his scheduler called back to make the appointment. Then they mailed us the bloodwork orders along with a list of labs which met his requirements. We easily found one in our area, we are in the same state, I'm sure that helped.
My son's illness did not start with an obvious major flu event from which he never recovered. He just kept getting the flu over and over and over again. We can look back now and see that these "flus" were PEM. We can remember specific athletic exertions preceding the "flus". This started sometime when he was in the 4th grade. He also developed headaches, fatigue and sleep onset insomnia. When summer vacation started every year he just wanted to rest for a good month before spending any time with friends, going to camps, or on trips. Intermittent mild cognitive impairment began in the 7th grade. A sports camp the summer before his 8th grade year left him looking like he was dying- literally. An injury at the start of 8th grade triggered body wide pain, tingling, steadily declining energy, worsening cognitive impairment, orthostatic intolerance, and he continued to keep getting those "flus". At that point he was diagnosed with fibromyalgia. We tried all of the recommended treatments. The meds made him depressed. The exercise clearly made him worse. His school attendance steadily declined with his health. A few weeks into his 9th grade year it was clear that it was no longer in his best interests to physically attend school. We began homeschooling him while searching for effective treatments. He just kept getting worse and worse. My brilliant son would spend all day going over the same paragraph without understanding or retaining any of it. The harder he tried, the worse he got. Eventually he was so cognitively impaired that he could no longer read, do math, tolerate hearing Spanish, which he had been fluent in since the 7th grade, or remember anything about himself or his life. He didn't recognize his own face in the mirror, or his parents faces. He couldn't tolerate noise, light, odors, flavors. He had periods of time when he was unable to walk, speak, feed himself, or hold himself up. I won't bore you with all of the things we tried before realizing that he had ME/CFS. None of it helped him at all. Some of it made him worse. He only began to get better 3 years ago when he saw Dr. Chia, that was 7 years after he started to become ill.
Yes, insurance does cover it.Never Give Up, does your insurance cover the lamivudine?
If you are paying out of pocket for it, what is the approximate cost per month?
Yes, insurance does cover it.
He has done this type of testing in a research setting, but I don't believe he uses it clinically.Does he perform this test for all of his patients?