Need Encouragement

[whaleharbor]

Dear Friends,

Thanks to all of you, I talked my doctor into AP therapy a year ago.  He prescribed doxycycline 20mg daily…that's the only course of treatment he said he'd agree to.  Meanwhile, I remain on celebrex and prednisone but am much, much better.

He keeps try to talk me into taking methotrexate which I don't want to do for various reasons including that I'm trying to get pregnant.

But he has me thinking that if I don't take mtx I'll be crippled one day.  He last called to tell my that my inflammation numbers crp and sed rate are increasing which proves that I need to take MTX sed=38 crp=3…neither are normal but they don't sound so bad to me.  I'm baffled actually because I feel pretty good.

I've made an appt with another rheumy to get second opinion. I've requested over and over again a physician referral for the Treasure Coast area of Florida but no one seems to respond to my email.

If someone know an AP doc, can you let me know.

If someone knows if my test results are that good or bad can you let me know.

If someone has some encouraging advice – – like hang tough little camper…please let me know.

I need  help. 

whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[linda]

Hi whaleharbor,

I'd say stick to your guns, trying to get pregnant is the perfect excuse for not taking mtx. Plus, arthritis tends to go into remission when one gets pregnant; I've heard it's because our immune systems shuts down a little bit to prevent rejection of the fetus, but I'm not sure if that's the reason. Be prepared for it to come back worse than before once the baby is born, that's what happened to me with all 3 of my pregnancies. I wish I could help you with a doctor referral, but I don't know of any outside of AZ or TX. That sed rate doesn't seem too bad to me, but it is abnormal; maybe your doctor is worried about joint damage. Do you have a PCP who could rx the abx for you instead? Good luck with your doctor search, let us know how things are going with you.

linda

[Cheryl F]

To request a listing of AP doctors in your area you can send an email with information on your area (maybe a large city not 'treasure coast area'). Send your request via email to apdoctors@roadback.org.

Also, if you look on the RBF website under the heading Community the select Antibiotic Protocol Network Contacts, you will find the email address for the Florida RBF contact person.

My opinion is that you would have a much greater success with AP if you had a knowledgeable doctor who truly supported AP therapy.

Good luck!

Cheryl Ferguson

[suera]

stay the course. i have gone to 3 rhuemy's and they all say the same thing, mtx, pred,enbrel yada yada….don't do it especially if you are not feeling that bad and are trying to get pregnant. your numbers dont seem that bad. why such a low dose? sorry such a jumbled message,surgery on right hand,hard to type…stay strong

sue

[DianeWI]

Hi Whaleharbor,

I would stay off the methotrexate also.  I have taken it and it is a killer on the guts.  I was on it for about two weeks only.  I simply could not stay with it. 

If you could find someone that would prescribe the I.V.s for a time, that would give you a great boost, then stay on the Minocin program.  Some do well with the doxy.

I got pregnant after I became very ill and the pregnancy did indeed make me feel better and most of the duration of nursing too.  AFter that, I did not do so well again.

I think the AP is the way to go.  If you need meds, it would be great if you could go to Mexico and get treated.  Their drugs IMO, are better then what is here in the states.  My daughter and I both did better on their meds.  Other people in my area also went to Mexico and had a better outcome.   I don't understand why the states have to regulate the drugs the way they do, but it is what it is….

Hope you find some solutions soon.

Diane

[Terri9967]

I am newly diagnosis with Scleroderma, and at first I was put on methotrexate and it helped me 110% BUT the side effects were not worth it!!!  I would stick to your guns on refusing the methotrexate unless you are at a point where you are stuck in bed all the time and in extreme pain all the time.

[Pip]

Hang tough little camper!

Seriously – stick to your guns.  If you're feeling better on such a little dose – imagine how you'll do on the 'real' one.

Also, maybe I'm missing something here – but you can't be on tetracyclines while trying to get pregnant.  However, an experienced AP doc will tell you which antibiotics you CAN be on.

Hugs,

Pip

[whaleharbor]

I appreciate all of your kind words.  I had a few bad days (emotionally) but have regained a little strength and am now seeking a new doctor(s) to  help.  Such a low does of doxy doesn't seem appropriate when everyone else seems to be taking a different approach.

I appreciate you all.  I've gained much strength from everyone.

– – whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Author]

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