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Doxycycline

Messages
11
Hi everyone,

I've been on doxy 100 mg 2x/day for over a year. My symptoms are mostly joint and muscle related, with fatigue and brain fog, too. To answer the OP's question: I've had no problems. Sometimes it hurts my stomach to take it, but i Ijust take some tums or eat something and I'm fine. No complaints really.

I also have some questions of my own, but here's some more background info first:
When I first started taking it, I was back to probably 80% functioning, so long as I avoided staircases, heavy lifting, etc. Then I lost access to it for 5 weeks. Since getting back on it, it never has had the same effect. It helps, for sure, but nothing like it originally did.

I need to find a doctor willing to prescribe it for CFS, ASAP - I only have a month's supply left and my doc doesn't want to prescribe more (that's another story, she thinks I still need it but doesn't want to prescribe it).

I'm wondering something:

How do you find GPs willing to work with a specialist and trust their expertise, because there are NO specialists nearby and I don't even know who prescribes doxy for CFS besides my previous doctor, and I can't pay out of pocket anyway.

I know this was incredibly long, but I don't know what information is legit and what's not. Like what sources of information do you trust, and how do I get docs to prescribe me the meds that have been allowing me to function and pay my bills? Links to your sources would me much appreciated.

Thanks for reading!
 
Last edited by a moderator:

justy

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5,524
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U.K
I know this is a bit late. My symptoms are mostly joint and muscle related, with fatigue and brain fog, too. I've been taking doxy 100 mg 2x/day for a year and 3 months. no problems. sometimes it hurts my stomach to take it, but i just take some tums or eat something and i'm fine. no complaints really.
Hi - welcome to the foum.

Perhaps you have Lyme as well? or other co infections perhaps? have they been adequately tested for? I don't know much about mycoplasma - I have chlamydia pneumonia and Bartonella and possible Lyme, and I do know that those infections can change for inside the body and require multiple types of antibitoics together to get rid of the infection. Also som infections will become resistant to the abx you are taking over time. Have you really tried researching mycoplasma to find out about these issues.
 

justy

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U.K
As this thread is about Doxy, I thought I would just add that after my trail with Doxy it is possible I am allergic to it. I had severe all over body itching after taking that took a couple of days to subside. Some people have reported this when killing off Lyme etc, but it also could be a sign of an allergic reaction.

I have also had severe reactions to other antibiotics so am now going to see a toxicologist who will do skin prick tests of various drugs to see which ones I am actually allergic to if any. Side effects can be put up with, adverse reactions can be serious and allergic reactions can be very serious.

I hadn't realised but an allergic reaction can get worse over time, so if I presumed it was just die off causing the itching, but I was actually allergic then over time I could become more sensitised and end up in shock.

Someone on the cpn help forum advised me to get properly tested so that I can be safe and know for sure what abx I can and cant take- as realistically I am probably not going to get much better unless I take some kind of long term abx.
 
Messages
11
Hi - welcome to the foum.

Perhaps you have Lyme as well? or other co infections perhaps? have they been adequately tested for? I don't know much about mycoplasma - I have chlamydia pneumonia and Bartonella and possible Lyme, and I do know that those infections can change for inside the body and require multiple types of antibitoics together to get rid of the infection. Also som infections will become resistant to the abx you are taking over time. Have you really tried researching mycoplasma to find out about these issues.

Yes I've been tested for lyme 3 times, but I don't know how to evaluate whether the testing was adequate.

I'd love to do more of my own research, but I don't know what sources of information are trustworthy. It seems like there's a lot of misinformation out there, a lot of people who aren't being objective and are letting their opinions seep through, a lot of people eager for answers who attach themselves to the first possible solution, even if it isn't proven, and a lot of doctors who claim to have The Answers, when their protocol probably only works for some patients and not others. I'm also not medically literate enough to really understand medical journal articles...

Any research advice greatly welcome!
 

Daffodil

Senior Member
Messages
5,875
I'm on remicade and can't be off immunosuppressive meds because I keep having surgeries to chop intestines out. I am going to hopefully start LDN in addition though in a month or so. I'm really praying this will be the answer to my CD and ME.
hi fibro. have you considered the cowden protocol (samento etc)?
 

Daffodil

Senior Member
Messages
5,875
Yes I've been tested for lyme 3 times, but I don't know how to evaluate whether the testing was adequate.

I'd love to do more of my own research, but I don't know what sources of information are trustworthy. It seems like there's a lot of misinformation out there, a lot of people who aren't being objective and are letting their opinions seep through, a lot of people eager for answers who attach themselves to the first possible solution, even if it isn't proven, and a lot of doctors who claim to have The Answers, when their protocol probably only works for some patients and not others. I'm also not medically literate enough to really understand medical journal articles...

Any research advice greatly welcome!
hi mak. I think the gold standard right now for lyme testing, is a test called the Borrelia LITT ELLISPOT. The lab that does it is Infectolabs in Germany. some lyme doctors send your blood there I think, or you can call and ask for a kit yourself.

xoxo
 

physicsstudent13

Senior Member
Messages
611
Location
US
I'm trying a short course of rocephin and it has really helped my brain fog/cognitive impairment. I am getting the ELISA test and have a lot of neck stiffness and had this small blood blister. Is an MRI/SPECT scan have a greater probability of a true positive?