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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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Do you understand how antivirals work? They slow replication, they do not kill the virus. You are still dependent on your immune system to kill the virus-infected cells. If your immune system is doing a very poor job of killing the virus, which is quite possible with immune dysfunction, then you must rely on the natural die-off of the infected cells, which can take a very long time if the virus is continuing to replicate, although more slowly than it would without AVs So it's possible people don't get better rapidly with AVs even if a persisting virus is the cause. Those people could be perfectly correct that they still have virally-infected cells (and symptoms) after fairly long treatment with AVs.I think this is analagous to ME patients who go out to get antivirals because they are sure the viruses are the cause, but don't get better with them.
I don't think there's a solid explanation for how muscle issues might cause swollen lymph nodes, sore threats, headaches, cognitive dysfunction, or orthostatic intolerance.What if those neurological and immune issues have a root cause within your musculoskeleton?
I'm with @Valentijn on this one.I don't think there's a solid explanation for how muscle issues might cause swollen lymph nodes, sore threats, headaches, cognitive dysfunction, or orthostatic intolerance.
I just found this post and would like to ask if you got to know for how long time they had IV antibiotics? What could be considered "long time" ?By the way, this week I met in person two different people (one of them a nurse) who recovered from severe Lyme with long term IV antibiotics.
The person that told me the most about her ordeal was the nurse. She was out on medical leave for nearly two years, severely incapacitated, until they figured out it was Lyme. Her onset was very quick, from being an avid runner to barely able to walk and slurring her speech. She said she had IV antibiotics for about 10 months, but for most people it takes 12 to 18 months of IV treatment, specially those who have been dealing with the illness for a long time without any type of treatment. What I liked the most about our conversation is that she told me her cognitive issues gradually went away, and that her awful experience with the illness prompted her to help and advice others dealing with this nightmare.I just found this post and would like to ask if you got to know for how long time they had IV antibiotics? What could be considered "long time" ?
I would not disagree with this. Well, maybe a little...
I do not have a science background. I'm not even all that good at Lyme science.
I know the politics of both major camps, though. I know what drives each. I know the biases and strengths and weaknesses. I am familiar with both the mercenary and legacy concerns inherent in each camp. And there are many like me.
What kind of role might a non-science patient assume? That of a watchdog or a referee.
But point taken. I readily concede patients admitted to the process should be qualified scientifically.