Re: Re: Had to stop my AP therapy

September 4, 2010

,

I have Interstitial pulmonary fibrosis from the RA and DM. I had a real bad

flare in 2005 and was in the hospital, went to see a pulmonary doctor,

afterwards, who told me I needed to have a 5 year pneumonia shot becase I had

pneumonia in the hospital, WRONG, I had a severe inflamation of my lung tissue

and within just a few weeks I was so sick, lost a lot of weight anf finally

finding another pulmonary doctor had a regular lung biopsy done where they

couldn't even get a piece of the lung because it was so swollen. I had this open

lung biopsy done which hurts like nothing I had done before. I had a tube in my

chest for four days and they gave me morphine, which I am allergic to. Took me

weeks to get well and then I got pleurisy, inflamation of the lining of the lung

and that hurts every time you breath. I was on 60 mg of Prednison, antibiotics

(wish I had known about the AP then) and pain meds.

I am doing lots better, I did have a nasty fall mid-July, did something stupid,

wiped out on the floor and broke my hipe, jammed my leg up into the broken hip

area and bruised my left arm. So now I am healing with that, doing PT and

walking every day to get back to being strong again. I kept up the AP in the

hospital and rehab. In rehab they actually gave me my medication and

supplements, so I didn't have to pay that much on meds.

BTW: I am taking LDN (low dose Naltrexone), and as soon as I was five days of

the pain medication I went back to it again. I sleep so much better and longer

during the night. I get the medication and then go buy distilled water (99 cents

a gallon) I get one of those syrenges you use for babies and I asked the

pharmacist to let me have a 50 ml bottle. If you ever think about using LDN it

also helps with the RA pain. talk to your doctor. you canÂ look it up under low

dose naltrexone.

talk to me about it another time.

Take care,

Eva

From: maryo708 <maryo708@...>

Subject: rheumatic Re: Had to stop my AP therapy

rheumatic

Date: Saturday, September 4, 2010, 1:52 PM

Â

Hi, Eva. Thanks for your help. Now that I know what to ask for I will see if a

free clinic in town can help me at least get the PFT done. Meanwhile I will

check on the contact info for Dr. Sinnott. It would be so helpful if I could

travel and see the dr. in one day.

What was your problem that you had the lung test done, Eva? Related to RA or

not?

How are you now? I absolutely know I can't take the ABX for now...after the last

" trial " to see if I could take DX on a limited basis and had to sit up to sleep

so I could breathe...and the burning which i relate to the burning in my joints

when RA was bad.

Thanks for the info on hospital times, etc. And since you say he is till seeing

patients, I will contact Dr. Sinnott's office in Iowa. Thanks so much.

O

>

> From: DEBBIE GIBSON <Debbullwinkle@...>

> Subject: Re: rheumatic Had to stop my AP therapy

> rheumatic

> Date: Saturday, September 4, 2010, 11:04 AM

>

> Ã‚Â

>

> O....good to hear from you....I will try to answer all your

questions...and if I miss something, please write again...

> RE going off the mino....did you go a CT scan to see what was going on with

your lungs? Did you have PFT's done? Without a Ct scan it is impossible to dx

OB, ok, I am thinking maybe they could dx it with a lung biopsy...like they did

me...those are not fun.....it could be something else entirely...which means

that minocin might still be a viable option for you, but I would be veryy

careful if you think its an allergic reaction...before you go back on it tho, I

would definitely either ask your physician or go see Dr Whitman and ask

him.....IMO...Keep in mind that OB is veryyy rare in being minocin induced, in

my opinion...however since it has occurred in the literature in patients taking

minocin for acne...Dr. Whitman felt I had to come off...I did quite well on the

minocin for several years...in my case....since OB can and does occur in

RA....we don't know definitively if the OB was caused by minocin use or the

RA.....

>

> Re LDN...I have researched its use but to date, am not using LDN....I don't

know if it is expensive or not? Anyone out there know? I am keeping LDN in mind

tho for the future...

>

> When you say you stopped the mino, did you just immediately stop or did you

try lowering your dose? to see if the burning stopped? Do you have an ABX Dr

supporting you...What about DR. Sinnott in Iowa, is he still seeing patients

anyone? I have had several phone consults with him,..found him very helpful...

>

> Yes, I do see Dr. Hendriks Whitman in NJ...he is great...re the lack of

insurance...troubling...believe me, I get that...here are some of my

thoughts...If you are having trouble breathing....wheezing and sob...I think, in

my opinion you need a PFT at the very least....and if the results are not

normal...then a CT...I don't like CT's and in general...refuse them...BUT....you

have to know what is going on....is it fibrosis? Is it OB? Is it asthma? I am

just thinking aloud...Most hospitals...especially in emergencies...have to treat

you....have to deal with the crisis...Have any of your DRs stuck the little

pulse ox thingy on your finger to give you your oxygen sats? If so...what was

that? I am concerned because sob, from my understanding could also be heart

related...so...if it were me...I would go to the nearest hospital...unless its

an emergency, not on a holiday...long waits..with lots of sick people...(I try

to avoid sick people because my immune

> system is sooo fragile, when I get sick I am sick for months) Tell them you

are SOB and wheezing..let them do the pulse ox...etc...they may do a chest film

first...then do a pulm function test, a PFT...then if they still don't know they

may do a CT scan of your lungs...those are good places to start...AND without

ins...they go by your income...when my husband was laid off....I filled out

financial info with the hospital...and only paid a small percentage of the

bill...they are required to give you a break if you have low income...

>

> Yes, I would go see Dr. Whitman...if you go, take all your records, list of

meds, questions...symptoms,etc...I always arrive prepared and

organized..maximize my visit with him...

>

> Re any DRs that treat these diseases in your area, Ethel? anyone...they have

lists of abx physicians...

>

> Re the cost of photopheresis...it is outrageously high...Ins was not happy to

cover it...I had to fight them for 1.5 yrs...but I did receive it for 3.5

yrs..and today, my OB is gone and has not reared its head again...NO, I would

not try to schedule that...not at this time...because you don't know what you

are dealing with...in order for that to be dx, in my opinion, again...you will

need a PFT...and probably a CT scan...just guessing here...but I would

think...without ins, photopheresis would be difficult to

obtain...however.....there are photopheresis units all over the country and

many...might willing to work with you.....Dr. Whitman does not have a

photopheresis unit in his offices...they are, to my knowledge, in hospitals,

clinics, etc...we have one here in Cincinnati now...so they are becoming more

and more available...something to keep in mind ....if you need it...good to know

where they are...

>

> If, your tests in fact to dx OB...then yes, I would definitely pursue

photopheresis...you will need a DR to order it for you and one to go to bat for

you to help you get it......Right now, I just feel it is premature to think

about it...because I am not sure what you are dealing with...photopheresis

definitely helps with lung issues...but will a Dr prescribe it not knowing what

is going on? Hmm.....I don't know about that..

>

> Do you have a rheumy that you see on a reg basis? Don't worry about the one

that fired you...I have fired so many local rheumys over the past 10 yrs

goodness, maybe 2/3 of the rheumys here in town..LOL ...until I found Dr.

Whitman...I do like my guy here in town now...but Dr. Whitman is my once a year

DR....he seems UP on all the latest studies, treatments, etc...and I take it

from there...my Dr here in town only prescribes the usual...and I am unwilling

to take any of the more toxic drugs ....I may change my mind but so far, not

yet...

> Hang in there ...it does get better...you will find good Drs....its a

constant process...Please let me know if I have not answered any questions you

asked...

>

> rheumatic Had to stop my AP therapy

>

> 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

>

September 4, 2010

,

Â find a pulmonary doctor, if what you describe to Debbie, it sounds what I had

in 2005, cough,nothing coming up, hurt worse then the asthma. Don't let them

talk you into a flu shot or pneumonia shot, it will make it worse.