how did your RA start?

[ekrueger]

Hi Patti,

So it seems like a lot of people on this site have Lyme Disease as well. Did you get a bullseye rash with that or not? I wish they could always pinpoint that as the cause because at least then there would sort of be a way to prevent RA. I guess I could look this up but is Lyme Disease curable? Are you in remission now?

Thanks,
Liz

[Eva Holloway]

Liz,

you more than welcome here and there are many people here that can help you when you ask questions, We are not doctors, but most of us have been there and some are providers to a family member and know what has happen to them and how hard it was on them to provide for there loved one.

Sorry that you have to come to this site but as many who have come here, they where looking for help to get their life back. As I said it will take time, but also there will be days when you will swear the antibiotic is not helping because it goes slow. You have to make up your mind to stick it out. Finding a doctor is not always easy, but sometimes there is a doctor willing to do the AP. You can print out the info on the Road Back Foundation site for the doctor.
Eva:D

Eva Holloway

[ekrueger]

Hi marg,

So you say your dtr is in remission. Has she been in remission for the whole 4 years? And by remission, does that mean symptom-free? I don't blame her at all for continuing on the Minocin. It sounds like a smart thing to do considering you take the risk of an intense flare.

Liz

[Peach73]

Liz….what type of doc did you see that put you on preventative AP?

[ekrueger]

Hi Eva,

I greatly appreciate the advice, information, support, etc. that you all offer on this site. I haven't run across anything quite like this on the web thus far. Maz was gracious enough to send me the Missouri AP doctors list several weeks ago when I first inquired about it. I feel like you hit so many road blocks when you are trying to go it alone and I'd been to 3 doctors, none of which recommended AP. In fact, they said, “we only try that in people who haven't responded to any other drugs”. I'm glad I stumbled upon this site because if RA ever rears its ugly head, I'll be ready and I won't have to take any of the DMARD's with side effects and I can go straight to AP. Actually, I'm already using the AP and it seems to be going okay so far.  I'm sorry, I didn't catch how your RA started. Please share 🙂

Thanks,
Liz

[ekrueger]

Peach,

I called Dr.S in Ida Grove. He was more than willing to put me on it based on my bloodwork. He said it couldn't hurt and could only help so I'm on the M-W-F 100 mg 2x/day dose for 1 year.

Liz

[Eva Holloway]

Liz,

click on the www. info below my medical and you can read my story.

Eva:D

Eva Holloway

[Patti D]

Liz,
Let me say this is as close as I have come to documenting my history on this site. We have fun here, help each other out, build each other up but quite frankly telling your story is reliving the pain, literally. It is so hard to go back there. I sense the fear you may be feeling right now as that blood test is a predictor but not an absolute. No one can say for sure you will get this disease.

I saw 4 different doctors and like you my anti-ccp was positive. Mine was very high meaning serious disease. That did and still does scare the crap out of me.
I responded immediately to doxycycline and my blood work drastically changed after one month of minocycline.
I did not have a bulls eye rash I had multiple rashes and still do. I have a back yard full of deer all of the time not to mention all the other tick carriers. Some doctors told me lyme some said I am over the lyme. Some said I have both but regardless, I did not feel well.
Now for the good news. I can live the way I feel now. It is a new normal and do have pain but it is very manageable. The sadness is gone , the ability to do most things has returned and I have finally found a doctor I can work with.
I would love to have a lyme literate doctor but that is not going to happen for a while. Based on the description of remission by the rheumatology experts, I have joint pain in the morning that lasts for about 5 minutes when I get up. I have no visible swelling and my bloodwork and sed rate are normal. The last xrays showed no joint damage. I still take minocycline 100mg. a day.
I think based on their criteria, I am in a remission. Am I normal yet, no.

I am forever grateful for this treatment. I never took the other stuff but I did get stuck with prednisone initally. Am I happy. YOU BET I AM!!! I feel so much better.
A very wise friend of mine who is in a remission from cancer told me you will know when you are getting well as you will no longer look at this disease as a curse but see it as a blessing. You become more compassionate, more understanding, more patient and I do think sometimes more kind to others.
I am there now and really grateful that I have met all of these terrific folks here. I have also been able to help others start on there journey to feeling well by providing information and giving some encouragement. I don't want RA but I don't beat myself up over it any more. That may just be remission!!

If I did not have any of the symptoms I would probably not take any medication for a disease I didn't have. No prediction is 100%, just food for thought.
Regardless, I am so happy you have come here for anwsers. I am truly sending well wishes your way!!!
Patti

[Patti D]

Peach:

Hang in there. It will get better. It takes a while. At 1 year I was still not nearly myself. I too am sending well wishes to you!
Patti

[m.]

[user=1992]ekrueger[/user] wrote:

Hi m.,

are you in remission currently?

Thanks,
Liz

Hi Liz, I'm doing much better than in 2008. I stii have stiff joints and some days I ache more than others, but my joints no longer burn. That's a big improvement.

I'm still trying to get sex hormones balanced, and I've had some thyroid trouble of late. Also trying to eat more food and more good fats ala Diana Schwarzbein.

I hope the Doxy keeps working its magic for me. It's cheap, and I don't have insurance.

[Roz]

Hi,

I had rough flu like SX with severe upper body aches.

[100909]

wow…paint fumes???…interesting. when I think about it, I painted inside half my house last April. By June I was in full blown all out flaring. Never thought of that, and probably will never know. Just something to ponder though. Thanks, God Bless

[Author]

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