Welcome to Phoenix Rising!
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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Just about to buy some
Omg so sorry that happened to youI took doxycycline for 6 months or so. It did nothing for my ME-symptoms. The only positive thing i noticed from docycycline was its anti-inflammatory effect. I was in total prescribed 12 different antibiotics in a span of 3 years to treat overdiagnosed lyme disease, antibiotics did nothing than permanent damage to my gut, microbiome and overall health.
Google did. Yeah I know it’s dumb but at least I didn’t buy it. You guys knocked some sense into me.Hi @KaitIsTired .... not sure why you want to trial doxycycline which has been shown to have zeto effect on ME, and will severely damage your gut, and other, microbiome, possibly causing more problems for you than you probably want.
Who recommended this to you, and what was the rationale for that recommendation?
Google did. Yeah I know it’s dumb but at least I didn’t buy it. You guys knocked some sense into me.
Cancer and AIDs are both disgusting, cruel illnesses but least with cancer and AIDs you’re taken more seriously than ME. I literally had someone tell me to sleep less to cure myself. It doesn’t matter if I sleep 12 hours or 5 hours I’m still tired.Can't blame you there. ME is more disabling than AIDs and Cancer. We all are desperate for cures. At least you can brainstorm with others and avoid wasting time and money on dead ends.
Cancer and AIDs are both disgusting, cruel illnesses but least with cancer and AIDs you’re taken more seriously than ME. I literally had someone tell me to sleep less to cure myself. It doesn’t matter if I sleep 12 hours or 5 hours I’m still tired.
Ohhh, no, it's not dumb, we all resort to Dr Google and Dr Research, we have pretty much eff-all else. I wasn't judging, I was just alarmed that maybe an actual Dr had suggested that .... shudder ...Google did. Yeah I know it’s dumb but at least I didn’t buy it.
https://www.amazon.com/Ultra-Curcumin-Release-Bioperine-Absorption/dp/B005HZYYHSI remember being in that state. The two things that helped my sleep quality were to sleep with an earthing band and taking time release C3 curcumin.
I've hear thisconcept popping up occasionally here, and always from people who haven't had cancer.ME is more disabling than AIDs and Cancer.
No, sadly, you're not.Cancer and AIDs are both disgusting, cruel illnesses but least with cancer and AIDs you’re taken more seriously than ME.
Trial them cautiously, start low and go slow til you can determine how your system is reacting,I’ll try those out. Thanks for the recommendation.
Omg, I’m so sorry. It was so dumb of me to say that as someone who has never experienced such a disease. I take it back snd my heart goes out to all the cancer sufferers out there.
I've hear thisconcept popping up occasionally here, and always from people who haven't had cancer.
This is palpable bullshite. ME may make us miserable, usually for a very long time, it limits the parameters of our lives, it takes away things that we'd learned to count on, but, except for a very, very few extreme cases, ME doesn't routinely kill the patient.
Cancer does. Cancer is relentless. It brings with it the same companions that ME does: loneliness, fear, alienation, confusion, pain ...... friends dont know what to say so they take themselves out of any situation that would require that, you're too weak to continue pursuing the diagnosis that often doesn't come on the first, second, third, fourth, fifth, sixth try. You watch your body wither, dissolve, and slowly die, until finally there's almost nothing left of you, and getting to the bathroom is like walking to the Great Wall of CHina.
When you finally, if you're lucky, get diagnosed and treated in time, you spend anywhere from 6 months to a year puking your guts out, sitting passively in a large, well padded treatment chair, and watching as chemicals so toxic that the administering nurses have to wear breathing protection are pumped into your body. You wonder if the cure was worse than the disease.
You watch your hair drift down to the nearest horizontal surface until the agony of that final insult is too much and you just shave your head, your immune system is so damaged that you break out in raging shingles, pustules that turn into bloody scabs and are painful beyond anything I can describe here, and you pray that they dont make it up to your eyes because it'll blind you. The chemo destroys your digestive system first, where 75% of your immune system is, and pretty soon, what litle you can eat shoots thru you in a steady, diarrhetic stream. You hope that it'll stop before the nausea overwhelms you and you puke all over the bathroom floor because you're, shall we say, otherwise engaged.
You can;t keep food down, you have no appetite, but you know that if your weight drops any lower they'll have to suspend the chemo that's your only hope, and you force feed yourself in dozens of small meals a day, like a Strasbourg goose.
Suddenly your mouth grows a soft white forest of thrush, and that has to be dealt with. Your teeth loosen, soften, and you worry that they'll all fall out before your 'cured'.
You know that thee's no real 'cure'. Your deemed a cancer 'survivor' if you dont die, but youre really just a cancer evader, and the odds of a second cancer are terrifying, because you don;t konw if you'll make it thru another challenge.
You can;t sleep
You chug gallons of gastrograffin and are subjected to endless CT scans, MRIs, PETs, probings, surgeries, experimental drugs.
You have a lot of alone time to consider all this. You remind yourself of Nietzsche's dictum, that what doesnt kill us makes us stronger.
You hope that's true.
No, sadly, you're not.
Thank you for that very thoughty post.Omg, I’m so sorry. It was so dumb of me to say that as someone who has never experienced such a disease. I take it back snd my heart goes out to all the cancer sufferers out there.