Benn feeling pretty good as of late. Yesterday I took 1 yes 1 Minocycline. Today a TOTAL Flare. Everything I have is swollen and the pain is at 8. Coincidence? I should also say I did not take my usual 4mg Medrol. What a difference a day makes
Not a coincidence. From posts on the RB - people either got slowly better and then had the 3 month herx from hell or they herxed like hell in the beginning and it didn't seem to let up until around the 6 month mark. Some said 8 months.
This is why it's sooooo important to keep a journal. So you can look back and see the ups and downs and record ANY ah-ha moment until you can see it's working. It's hard as hell to believe it's working when you feel so bad. But, when it's over....you have your life back.
What dosage are you on? MWF will give you the most relief when you're herxing like you are. It also kills the most bugs so you don't have to go thru this all over again when you feel better and want to drop down to a maintainence dose. I assume they gave you 100 mg tabs? So only one 100 mg tab right?
I'm assuming Medrol is a pain pill??? If it is - take it! I needed it in the beginning and I'm still tapering off. At one point they gave me a bunch of Vicodin, but I only needed one. The rest were just Tramadol. I can go without now but I feel flu-ey when I don't. Go figure. If Medrol isn't a big gun and you can't get the herx down - get some of the big guns for bad days. Drop back to the Tramadol etc. when you can manage it.
I suggest skipping the next dose until the flare/herx starts to subside. Then start again.
Get lemons. I wish I had stock in lemons! That whole lemon/olive oil drink really cuts the herx. It's a pain to make - but it tastes like a frothy lemonade (assuming you like lemonade). It brought my herxes down to managable. I swear by it. Hell, my hubby swears by it as he's the one that saw the swelling drop etc. I hate lemon so I had to gag that stuff down. I'll gag anything down that works.
Can you tell us what exactly you are on besides the Mino?
Hugs,
Keep the faith -
Pip
Edited to say -
Did you see an AP doc? Did they run tests to determine if you had Lupus? Lupus people are veeeery sensitive to Mino. Some never get above the 25 mgs. level ever. You can buy empty caps and half your dose (quarter???) if need be to get you going.
OK, was a bit worried! If you do ever decide to do Mino - you pretty much can guarantee you're in the 6 - 8 month herx category. There are things you could do to prepare...but...just be aware.
Hugs,
Pip
P.S. Good Luck and congrats to your friend! They can get the 'cure'.
Also, if you ever decide to do AP you can pretty much guarantee it will work
Like the traditional meds for RA and other AI diseases - you are on low doses of antibiotics for the rest of your life. Hence the requirement to be on a LOT of probiotics - you are always killing off the good gut flora with the bad.
Once you start feeling like your old self - APer's tend to go into the "Stupid Zone" -> I've fixed this - I'm going off the antibiotics. From posts on the Roadback, the usual scenario is they quit the abx and the disease comes back - usually about 2 years after they stop (altho I saw one post from somebody who was abx free for 5 years) and it's much harder to bring under control the second time because of the nature of molecular mimicry etc. The baddies have morphed. It can be done - but now it's a total *itch.
That being said - there are posts (somebody who posted here once???) and ancedotal evidence of people that get better, quit, go off the internet, and are never heard from again. Kind of like Yeti or something. I'm figuring the number is low; give or take about 5%.
These are just regular APer's. Not people using the MP or any of the 'advanced' protocols.
I intend to be one of those people. I figure if I can go 5 years (like cancer survivors) off antibiotics without any return of the disease - then I'm 'cured'. I'll then work on fixing my medical chart to say 'history of PRA'.
My plan - because I don't want to be one of the stupid ones - (;-) is to address and repair every issue I can identify that got me into this mess in the first place. Leaky gut (probably the most important issue in how we got sick from my research), sleep problems, stress, weight, etc. so I can 'close the barn door' even tho the horse got out (I'm making sure another one doesn't :-) When I'm pretty darn sure I'm in a true remission (not to be confused with wishful thinking - no morning stiffness, no pain of any kind, labs returned to normal, gut healed) then I intend to stop the antibiotics and still get my labs pulled every 3 months until I hit the 5 year mark. I'm lucky - I feel great at an RF of 300-ish - I should have plenty of warning if I'm slipping back.
If I fail - well, at least I tried. If I don't fail - I'm cured.
A herx is a Jarische-Herxheimer reaction. It was first noted in people being treated for reactive arthritis with pennicillians. It's a temporary worsing of symptoms. It feels like a flare but it's dose related. Take a mino - get a reaction. You don't realize that's what's happening until you lower the microbial load enough so that you start to feel better when the Minocin is leaving the body. I think I've read it's like 22 hours after taking the pill. For me, it really hit home that it was working when I felt better on Tuesday and Thursday nights. Then, I'd take another Mino and start the cycle all over again until you have to look for the reaction. I'm to the point now that I miss it sometimes even when I'm looking for it.
Does this help?
Pip
Hi Pip:
I was interested in your feelings of going off minocin. From all I've read with AP, I feel that minocin will be part of my life forever. I'm in total remission (it took 2 LONG years) and for the first time have totally normal labs with no sign of RA or inflammation.
I'm still on the pulse Mon, Wed, Fri 200 milligrams and feel that I will probably taper at sometime to 100 but my doctor feels that once you have RA, you can never completely stop the minocin.
I can't tell you how it feels to be painfree. I will never take my health for granted again. Living in South Korea has helped me to. I have to walk everywhere and the subways are filled with tons of steps so I am a lot more active than back in the States. I've also almost completely cut out beef. It is sooo expensive over here that we eat most chicken.
Pip, I'm still amazed at all you know and if you ever want to visit South Korea, you got a place to stay!
Becky in Suwon, South Korea
Hey sweetie!
I do want to visit S. Korea - but I'm married to a couch potato - he's not into traveling at all. To be fair, he says traveling with me is the problem. LOL But when the baby is older, I think I'll vacation without him. He gets to play on the computer for a week or so (feeding the child occasionally ;-) and I get to see the world! So I may take you up on it. Or, come visit me in LA!
You are planning the safe and sane way with Mino. It's a huge risk but worth it, I think. I just have to try. I don't want those baddies any stronger than they are.
Remember you have to rotate your antibiotics starting around the 6 year mark. Some of these baddies morph enough to overcome the Mino for some percentage of us (10%???) around that time. Have you checked out Dr. Garth Nickolson's protocol for rotation yet? I haven't - but then, I've still got a lot of time. Like you, I think.
Hugs,
Pip