J. Herxheimer

[linda]

I would say that she doesn't have PsA, I'd forgotten about her RF results. There is a genetic marker that SOME people w/PsA have, it's more common in those w/AS, and that is the HLA-B27. I'm negative for it.
Sorry for the misdirection.

linda

[Michele]

Hi Maz,

Those links are good. I still don't know what my “splitter” dx would be. I googled burning rib cage pain and a site full of fibromyalgia patients came up with a discussion completely describing this particular pain perfectly. These folks also had swelling, swollen lymph nodes, and joint pain! There is so much overlap! I also saw a huge discussion of Lyrica and saw much of the same experience I had with it.

My rib cage is so bad today / tonight. But so is my left wrist / hand and both knees. Muscles in legs really cramped.

Yesterday I couldn't make myself take the Wed. mino dose. I think I may just wait a week and see what base-line disease is. Certainly by today the Monday Mino dose shouldn't be affecting my rib cage like this. I don't know if it triggers it and the muscles just spasm and can't get out of spasm?

I should mention last Saturday I had a great day!! It wasn't pain free but so much better. I sure wish that would last. It's such a teaser.

Michele

[Maz]

[user=50]Michele[/user] wrote:

I should mention last Saturday I had a great day!! It wasn't pain free but so much better. I sure wish that would last. It's such a teaser.

Here's to many, many more days like this for you and us all!  I know what you mean about it being a teaser. That's the three step fwd kind of day….and then you get those backward steps days to go and burst your bubble. Over time, though…hard as it is to believe now, the better days start coming more frequently.

Don't give up yet, Michele…you're bound to have a breakthrough with all this soon…finding out what is going on and figuring out the best way to change up your protocol. It sure does sound like you have some severe FM symptoms to go with the original dx of RA….but then I'm no doctor. I think many of us do have a bit of FM and CFS crossover with RA. My symptoms in the beginning were very much like yours, albeit I didn't have the rib cage pain. I did however, have horrible muscle pain, shooting pains down my arms and legs, skin burning, bursitis and tendonitis in addition to the joint pain. Btw, I also get the achille's heel snapping when I lean fwd too much. Whether it's Lyme or one type or other of mycoplasma, you'll eventually get all your tests back from Dr S and IGeneX and a bigger picture should begin to reveal itself to you to help you decide what course to take.  Fingers and toes are duly crossed for you – I can do that now!

Peace, Maz

[Maz]

PS. It's amazing how hard and uncomfortable it makes me feel to reflect back on just how rotten it really was in the beginning. Ugh…:sick:

[Fran]

Hi Michele-  I agree with Maz about talking to Dr. S and maybe trying a different protocol. I honestly don't know how 2 mg of mino is going to be helpful.  Getting a baseline of your disease is a good idea.  I found it helpful to me when I was going through the worst of it.  The rib cage pain—-I, too, as you know had that and even though I am doing well now, I can still feel rib cage pain on certain days—along with that odd spot/lump in my throat that comes and goes, although not as frequently as it did when I was in full flare mode.

What is RA?   I have no idea cuz I certainly ran the gamut of symptoms—joint pain EVERYWHERE! muscle pain, hives, weird rash spots, hair loss, rib cage pain, swollen glands, fevers of unknown origin, red hot joints, purple-looking fingers, feeling fatigued, flu-like…..the list goes on!  I don't know what is RA, what is herxing, what is some other related disease. 

Flare vs. herx—-really, Dr. S told me there is no difference.  Both are not good as both are inflammation.  But I understand you have to go through the herx to kill the mycoplasms.  As to why some people don't seem to herx like you and I do–maybe that has to do with our extreme sensitivity to mino.  Who knows?

Maybe it is time for you to press Dr. S into switching to something else.  I know in my case he wanted to try everything to keep me on mino but when it got to the point that I was so unwell on the mino and when I stopped it and got the baseline of my disease and realized how much misery the mino was putting me through and how much sicker I was getting on it–he decided that it was time for a switch.  When it gets to the point that you are dropping down your dose so low that its probably not doing any good, it may be time for a switch.  Towards the end I got where I could hardly tolerate 25 mg a week without suffering days of fever after each dose.

I really hope you get to a more manageable level soon!  I know this is taking its toll on your every day living.  I can so relate and I painfully remember!  In fact, as you know, I try not to think about the last year of my life and how much pain I felt and how ill I was.  14 months–to be precise! 

Take care!  Fran

[Michele]

Hi Fran,

Thanks for your post. Timely! I talked to Dr. Sinnott today regarding the rib pain and dose size. He said to just hold the course at 2 mg. It's clearly stirring things up too much at 3 mg and he wants it to be at a tolerable level. He still thinks I should stick with Minocin as it is doing what it's supposed to do at 2 mg and eventually the rib cage pain will be cleared, too.

Today is probably “baseline” as I'm 5 days away from the Monday dose. I don't notice any difference at all from when this all flared terribly on Tuesday.

I'm so glad you are doing better!!!

Michele

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