Had to stop my AP therapy

[Guest guest]

Hi all. I am sorry this will be so long. I know you are most patient, though. I

have been one of the 'quiet ones' out there. I have learned so much and

benefitted even more from you all. You continue to give me hope which may be

the greatest of all gifts. This disease steals that away again and again.

Well, I was diagnosed with RA 3 years ago next month. I had a sudden and severe

onset...went from normal person with a minor knee issue to almost completely

disabled..each touch or movement causing that searing hot pain. I slept maybe 2

hours at a time. The pain of the sheet was so intense and my body ached in all

but one sleeping position.

I went from dr. to dr. (my tests show diagnosis - RA negative and the only out

of bounds blood test, except high white cells, was an off the charts sed rate -

measure of inflammation). I was offered temporary meds (prednisone)...cruel in

that you feel good for a week then back to the pain and Plaquenil. The

Rheumatologist (one practice of only three in town - I am in the Kansas City

area - 2.5 million metro pop) was very blunt and told me I could expect to die,

that my life expectancy was reduced by about 16 years on average, and that most

die of lung problems, specifically suffocation. Well, thanks for the

encouragement! He offered only methotrexate after the plaquenil proved useless

(unless you are going to visit the jungle).

When I mentioned that I was thinking about Antibiotic Therapy and UV Blood

irradiation therapy he would only recommend Methotrexate as the next step. I

have always refused to believe that it can be a good thing to destroy one of the

healthy (immune) systems your body needs to 'benefit' another. Bottomline, the

dr. 'fired' me with a letter saying he would not be my doctor anymore.

I started reading the posts on this site. I took UVI. I finally found a a dr.

(OBGYN) to help me with a prescription for nongeneric Minocine (minocycline).

At this point it was 7 months down the road. I had stopped the pred. but started

again when I had to fly to Houston for the UVI treatments and knew I could not

otherwise fly or drive a car the several hours required for the treatments. As

it was I remember crying because I wanted to be clean for the appointment and I

had so much pain getting into a shower.

If anyone wants to know, the UVI helps (from a 10 pain level to an 8) but is

very temporary. Not worth it, esp. given the expense.

I started the Mino and by November of '08 6 months after starting the AP and

almost a year into the illness that wreaked havoc with my body, my savings, and

my life...I started to get well. I have blessed that time and those who helped,

especially Dolores, Eva, Debbie and many others. In those two years of progress

I became able to do many things again that I thought I'd never do. I actually

like to rake leaves now!

OK. And this is especially for Debbie G...you may have saved my life with your

info...I started to have breathing difficulties around the first of this

year...just some breathlessness. But this has worsened. After reading your posts

re: the Brochiolitis Obliterans, I sadly stopped the Mino. I tried alternating

with Doxycycline but the burning (inflammation) in my lungs returned. So no

antibiotics for me. My breathing is about the same now...that is wheezing and

shortness, but not so much burning. I am already starting to deteriorate again

in my hips and shoulders though, from the RA and lack of Mino (3 weeks now).

Debbie, I am without health insurance and in the midwest. I know you see Dr.

Whitman in NJ. Should I call and get an appointment? What does he charge? Does

he do photopheresis there? Is there someone in the KC area? What is the cost of

photopheresis? And should I try to schedule that ASAP? I know you take LDN. Is

that difficult to have a dr. prescribe? Is it expensive (like Mino)? Does anyone

know a clinic or dr in this area?

This is a scary disease. I live alone and have a college age daughter who

worries for me...I hate that. I have always been the one watching over her (esp.

since her dad died when she was very young). I am truly happy for Dolores and

those who get well. It gives us hope. My heart goes out for Eva and Debbie and

many more that post regularly (and many that don't)...you represent and speak

for and give hope to those of us that have more struggle yet to endure.

Thanks for listening.

O