Anyone had any luck with doxycycline?

[KaitIsTired]

Just about to buy some

 

[jaybee00]

Doxycycline won’t cure your MECFS.

 

[gbells]

Just about to buy some

I had a flea bite from a ferile cat and convinced infectious disease to put me on it. That jerk only wanted to do 2 weeks so I had my GP to extend treatment to six weeks due to being on immunosuppresants for lupus which was the correct protocol. It cleared up chronic daily headaches I had been having for years since the flea bite. I kept having nonspecific pos for Rocky Mountain Spotted Fever and never had been on it. Took a long time to finish but was very helpful. Didn't cure ME though.

 

[KaitIsTired]

Doxycycline won’t cure your MECFS.

Thank you

 

[ChrisD]

Took 2x one weeks of Doxy separately and then a whole month for orchalgia as Lyme disease. Had a huge setback after this, going from being able to go out each day for an hour or so to being couchbound. And had to work my way back up to previous health level but not sure I’ve ever made it back

 

[Thinktank]

I 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.

 

[YippeeKi YOW !!]

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?

 

[gbells]

I'd only do it if you had an animal exposure that could be a chronic infection. Your PCP should be able to send you for testing to confirm what the infection is. If it was nonspecific RMF, had infection symptoms (skin rashes, headache) and couldn't be identified I'd take docycycline for a few weeks and see if it helps you.

 

[KaitIsTired]

I 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.

Omg so sorry that happened to you

 

[KaitIsTired]

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.

 

[gbells]

Google did. Yeah I know it’s dumb but at least I didn’t buy it. You guys knocked some sense into me.

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.

 

[KaitIsTired]

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.
Edit: I apologise to all cancer/AIDs sufferers and their families. I assumed people would take you seriously but now I know it isn’t always the case. Once again I am sorry.

 

[gbells]

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.

I 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.

 

[KaitIsTired]

I 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’ll try those out. Thanks for the recommendation.

 

[YippeeKi YOW !!]

Google did. Yeah I know it’s dumb but at least I didn’t buy it.

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 ...

I'm glad that you brought it to forum here ..... you may get a lot of contradictory responses, but the truth will winnow thru ...

 

[KaitIsTired]

I 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.

https://www.amazon.com/Ultra-Curcumin-Release-Bioperine-Absorption/dp/B005HZYYHS
Is that the curcumin thing you were talking about?

 

[YippeeKi YOW !!]

@gbells

ME is more disabling than AIDs and Cancer.

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 discover that the timeline for a return to base is usually about 5 years. You deal with the inner rage created by the knowledge that your life has been stolen from you, that it could all have been different if the first few Drs had only listened, tested effectively, and started treatment two and a half years before they did. You work hard at not being embittered by that knowledge, because you know that your body and brain are dealing with more than enough toxins, adding resentment will only speed the deterioration.

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.

Cancer and AIDs are both disgusting, cruel illnesses but least with cancer and AIDs you’re taken more seriously than ME.

No, sadly, you're not.

 

[YippeeKi YOW !!]

I’ll try those out. Thanks for the recommendation.

Trial them cautiously, start low and go slow til you can determine how your system is reacting,

Sadly, one of the nastier little hallmarks of this crappy buzz-bomb of an illness is that what helps one of us may not only not help another, but may make them worse.

Browse the threads here. There are no quick, easy answers, but knowledge is power, and you'll gradually develope really good sense of what will or won't help you, what you're willing to risk trying, what you're not.

Dont take someone else's experience as your entire guideline. Take it as interesting input, research it further, make your decision based more on that, as well as what it might have done for another member.

Don't be led, don't be stiffled, don't give up.

 

[KaitIsTired]

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.

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.

 

[YippeeKi YOW !!]

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.

Thank you for that very thoughty post.

It's not your fault. ME is horrible, and if it's the only horrible, life-consuming, debilitating, frustrating, painful, endless illness you've had, it would naturally look worse than anything you could think of ...

And most people never bother to apologize, so you're light-years ahead of the pack ....

EDIT .... for usual poor typig skills ...