All 3 drugs at the same time?

[DiamondTNT]

I've been away from here for too long!  I've been enjoying reading some of the new threads since my last visit and am ready to update what has been happening with me.

I LOVE my new Dr found through the list provided to my from here!!!  Thank you!

We started with having to get all my prior medical records and test results, plus additional tests she ordered done, so it wasn't until mid Oct. that I started on Minocycline.  She said to stay on the Plaquinil, Methotrexate, and Enbrel then wean off them later.

10/27/2008: Started Minocycline, 50mg, once a day for three weeks, then 1 week off. BIG herxing sometimes, sometimes just OK.  Last of the 3 weeks was

Sunday, 11/16/08 and the RA symptoms eased until I actually felt almost normal by late that Wednesday.  Tuesday, 11/18, was my Dr appt and she took me off the Methotrexate, which is the first one I wanted off from.

Monday, 11/24/08 I started my next 3 week of Minocycline.  It took until almost midnight, Thursday, 11/27, for the next bit herx to hit, and it hit hard and fast.  Friday I could barely move with my neck, jaws, and headache being so bad I ended up sick to my stomach also.  Then my hips got really bad.  Now that I'm into my 2nd week of Mino, the RA symptoms have eased quite a bit.

It's so difficult to cope when my whole body hurts so much, but believing in the AP helps me get through whatever it throws at me.  It bothers me a little that my right little finger appears to be bending, but I hope that stops.

Does this sound right?

Thank you so very much for this website!

[Maz]

Hi Diamond,

Thanks for popping by with your update and so great to hear you love your new AP doc! I think Froggy is down in Florida and was having trouble locating a doc for herself. I wonder if yours would be near enough to help her?

These early days when we're hit so swift and hard with RA are very hard, but it sounds like you're keeping your spirits up as much as possible! Hope, this BB and the help of a supportive doc is what got me through, too.

I'm interested in the protocol your doc is using…did she explain why she was using 3 week pulses with one week break? This sounds very similar to a Lyme protocol I was on last year where I was taking tetracycline and clarithromycin for two weeks (to elicit a herx), taking a week off for a washout period, and then recommencing a further two weeks on Diflucan, a weeks washout and then repeat. I did this for several months, but the herxing and hypersensitivity got a bit much for me. However, I was on very high doses and had no immunosuppressive help. It was after these long pulses that I then went onto low dose, pulsed AP with minocycline and later added the zith.

This is interesting, because it's the first time I've heard of an AP doc using long pulses like this. It's kind of similar to Dr Nicholson's protocols, too. What will matter over the long term is how you're responding. If you're improving overall, then it's working. If not and the herxing becomes intolerable, you may need to work with your doc on adjusting the protocol. There is a saying around here amongst the oldtimers…”Kill the pathogens, not the patient.” 😉

So nice to hear your update and rooting for you from afar in CT!

Peace, Maz

 

 

[davew]

Hello Diamond…

Sounds normal to me, considering we are on two different sets of drugs…. I experienced the same type of herx as you.

Good on you for maintaining that good attitude and trusting in the AP. It will work.

I have been back on AP after a long absence and am not where I want to be, but am a long way from where I was. Hope springs eternal.:)

Have you looked into MSM as an anti-inflammatory? Several here use it in quite large (safe) doses and it helps immensely. Type it into the search box above and there is much good reading on it.

Best to you…

Dave

[DiamondTNT]

Maz, have Froggy contact me for the Doc contact if Indialantic Beach isn't too far.

Thank you to all of you again.  I just got off the phone, chatting with the RBF person that sent the list of FL docs to me.  It's my first real conversation with someone else that has RA and knows all about it and AP.  It's so nice to be able to share with people that really KNOW what it feels like.

[DiamondTNT]

Froggy and I are communicating.  If close enough, I hope we can do lunch.

[Maz]

Diamond, thanks very much for your help and do hope your doc works out for Froggy. You're right…there is nothing like talking to others in the same boat who completely understand what you're going through! There are some pretty terrific people volunteering for Road Back and I know I wouldn't be where I am now without their help, too. 😀

Peace, Maz

[Author]

Posts