Zebra
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(that emoji is meant to convey a hug, not necessarily their happy, smiley faces, which it might feel good to punch right now)
Could it be Long Covid
- Thread starter Hope_eternal
- Start date
(that emoji is meant to convey a hug, not necessarily their happy, smiley faces, which it might feel good to punch right now)
Hope_eternal
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Thank you @Zebra 
wabi-sabi
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Yes, my parents are dealing with this too and I know it worries them a lot. I wish there were good answers.
I don't mean to be criticizing you, although I can see how it would sound that way. I'm sorry about that. There's just so much misinformation out there and I want to find some way to fight it. I get quite vehement! I really am just trying to protect you and your son from treatment approaches I think will do you harm. That's why I shout so much. I can completely understand turning to functional medicine. I just don't believe it can help, I believe it can do harm and I hate it for preying on you in your desperation. That's really why I get so upset. If somebody were giving you bad advice about a stubbed toe that would be one thing, but to be giving out bad advice for serious things like ME/CFS or long COVID, is beyond the professional pale for me.
But to be clear I am hating on functional medicine, not you when the healthcare system failed you. I'm not impugning your judgment or your care for your son either. This is going to sound like a silly example, but the last time I was able to take my car to the dealer for servicing, they told me the water tank was cracked and I needed to replace it at great expense. I didn't since I was just too sick to bother. Years later, the tank seems fine, there's no puddle in the driveway and the car runs good without overheating. I can only assume they were trying to trick me. That's not an indictment of me. That's on them. But I'd sure like it if someone warned me off that dealership before I went there.
Oops, might be another rant coming on:
I mean even the herxing that your functional doc mentioned isn't true or right or real. A Jarisch-Herxheimer reaction refers to a very specific reaction that happens when a spirochete bacteria is treated with an antibiotic. It doesn't happen with viruses like COVID and it doesn't happen with drugs like ivermectin (even if ivermectin is indicated). It doesn't mean a generic bad reaction to a drug or a generic die off reaction. What he's telling you isn't right, according to any biology that I know. I don't mean to come off as judgmental or condescending in explaining that. I just don't know a better way to do it. And I am very concerned that this person is giving you bad advice that isn't real medicine or real biology. He or she is explaining basic ideas in biology wrongly to you. You can listen to Wikipedia if you don't like the way I explain. End of rant. https://en.wikipedia.org/wiki/Jarisch–Herxheimer_reaction
Anyhow.. sending you hugs and good thoughts. I think this disease is harder on family than it is on the sick person I'm just some random person on the internet and you needn't listen to me. I'm not a doctor and I can't fix anything.
Hope_eternal
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I understand you are trying to be helpful. I don’t have 100% trust in mainstream medical for many reasons one being when my son was two years old, he became very ill, completely out of it, would drop to the floor after taking two steps and pass out couldn’t eat or drink without vomiting, and I knew something was terribly terribly wrong. I brought him to his doctor who assured me he only had the flu, but deep down I knew something was not right and he definitely didn’t have the flu. We took him to the emergency room and again were assured he had the flu. I protested and said I hundred percent know this is not the flu. Something is very very wrong. The doctor was kind enough to admit him so they could further explore the situation—again for days I was told don’t worry it’s just the flu. I kept telling them that this was no flu I’ve ever seen. I had to put up with nurses telling us it was nothing and them not tending to him when he vomiting all over himself and all over his bedsheet. We finally had to go find clean sheets and change it all out ourselves because they kept ignoring us. I could tell they thought we were hysterical but I knew there was something really wrong. Four days later my son‘s stomach was severely descended. They took him down for emergency surgery and there they found that his small intestine had been strangled by Meckels diverticulitis. My son could’ve died and I’m thankful every day that the doctor admitted him. He came back to tell me how it was because of me that he decided to admit him and do further testing and that he was convinced my son had the flu and that he is was thankful he listened to me. The very same thing happened a year later, again I was told it was just the flu. They did admit him based on the past history but again for days I had to put up with them telling me it’s the flu even though I told them he is acting the same exact way as last year. They kept telling me if it was that he would be doing diarrhea and he would have a severe fever, I told them he did not present that way last time and he indeed had a strangulated intestine. Lo and behold his Stomach got severely distended and emergency surgery. This time his bowel had twisted, again he could have died.
I just hate how our medical community doesn’t listen to its patients and we are made to feel like we are hysterical and that we couldn’t possibly have any insight. They did the same in regards to ME for almost a year I had to put up with them telling me and my son that he was depressed and and he needed to exercise and get out in the sun Which is total utter bullshit and I repeated that over and over again this is no depression I’ve ever seen. When I toll him to the ER for the fatigue to get some answers he was treated like a psych patient. I was furious! He and I both told them he is physically incapable of doing daily activities to where his body just gives out and he has to sleep and sleep and sleep. My son stated himself that he was not depressed. He was a physically exhausted, that he had nothing to be depressed about. He was in college and was loving it and didn’t want to leave it. So you can see how I don’t trust our medical community. They don’t listen and think they know everything which is why I’ve turned to functional doctors —at least they listen and they try to get to the root of the issue. I haven’t completely written off the medical community because there are a handful that don’t just try to chalk everything up to psychological One is his primary doctor and the others were a rheumatologist and endocrinologist but they are far in view between.
As far as herxing it’s another way of saying a patient is having a paradoxical reaction or a detox Reaction to treatment which is very common for people with chronic illnesses to have detoxing when eliminating various viruses and bacteria from the body. So yes initially the Herxing phenomenon was detected with anabiotic use for certain illnesses. It is now used to describe paradoxical or detox reactions as well.
Again, I’m very cautious when considering any treatment. In fact, I drag my feet and am very slow to start anything because I have to do my due diligence and make sure number one the treatment has been around for a very long time and number two it is well tolerated and number three. I wanna know everything I can about it. We are two years in this and at the beginning of his illness two doctors wanted to put him on LDN. It took me two years to try it for him so if that gives you any idea of how long it takes me, lol. I’m not like that with everything. Some things I can get him on quicker because they are more benign, but I try to hold out on the things that I think come with more risks.
I do appreciate your care and concern and see where your heart is coming from. I came across a very interesting report about a young woman ME that actually addressed Herxing/paradoxal/detox in her healing journey as well. Posting it here in case you want to read it, I’m also gonna post it in a new thread.
https://www.mdpi.com/2227-9032/9/11/1537
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