Re: Had to stop my AP therapy

[Guest guest]

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

[Guest guest]

I used cipro, zitromax, biaxin and a host of other abx. I tried about

10 different abx before I found the ones which worked for me which

were Cipro and Biaxin. I'm putting together a lil site with my own

journey you might want to check.

http://www.allergyfreeheaven.co.uk/

it's not finished yet!

On 4 Sep 2010, at 17:22, maryo708 wrote:

> 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

>

>

[Guest guest]

,

I am not going to be too long but as Debbie said go have a pulmonary function

test done and that saturation test they stick on your finger to see how much

oxygen you have in your lung.  You may be able to get that done in any clinic

if you tell them you want it checked. Some places do blood pressure and such

things free. I had the open lung test done and it is no fun, very painful, took

me weeks to get over it. The best thing is if you have no insurance go to the

hospital around 2 pm, before the kids get out of school and the dads get home,

the emergency room is less crowded. I mean I am lucky to have insurance, two at

that, but if you don't have any you tell them you are so short of breath you

need help. They have to help.

Antibiotics are no fun, I had a few that I could not use, so right now I am on

mino and Biaxin, I just found out some of my dermatomyositis is food problems,

so I was put on Pepsid AC (not the over the counter, but prescription). it helps

some, but I may have to go on Cipro to get the rest cleared up.

I wish you the best, I am down here in Texas and can't help you up there where

you live. BTW Dr. Sinnot is still taking patients, I had a friend that just came

back from seeing him, so that may be another avenue, call him if he takes your

insurance, if you have some.

Best wishes for better health.

Eva

From: DEBBIE GIBSON <Debbullwinkle@...>

Subject: Re: rheumatic Had to stop my AP therapy

rheumatic

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

 

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

[Guest guest]

Hi, Debbie. Thanks for answering with all your good information. Now I will try

to answer your questions, as well.

I tried to lower the dose of Mino before going off. Believe me I would do

anything to stay on it. I believe it really works. And I am even hoping that at

some point I may be able to go back on, especially if I can solve the breathing

problem. I also tried lowering the dose of DX after trying that ...even taking a

Vitamin with Iron to bind up some of the ABX...trying to fool it. But all lead

me to the same conclusion. That my lung capacity is getting worse, that it is

related to the ABX (at least for now). I agree also that there's a chance that

it could very well be related to the RA and not be caused by the ABX. I had some

skin issues (thought to be beginnings of scleroderma) and severe Sjogrens that

cleared up with Mino (and that are coming back).

I had asthma most of my early life. So what I have now is different. There is no

crackling of alveoli, my prescription inhaler does nothing to'loosen' up the

congestion, and the inflammation is worrisome and something I have not ever felt

with asthma. There is a dry cough that is unproductive.

I have no current dr. The dr. that prescribes ABX is my OBGYN who is sympathetic

and is open enough to help me out. He would not be the one to discuss

complications of AP therapy with, however. I would consider seeing Dr. Whitman

or even Dr. Sinnott if someone else can recommend him. It reassures me to know

that Dr. W has seen you and is proactive with photopheresis.

As far as all the tests you recommend. Yes, it would be best to get a PFT and

CT. I was hoping Dr.W or another AP dr. could give me a close enough exam, and,

having dealt with the symptoms and treatments previously, that I could eliminate

maybe a step or two. After all my experiences with drs. I would only consider a

dr. this group recommends.

Thanks again for all the help, Debbie. Yes, I will hang in there...you guys make

it easier. What are you taking now in lieu of ABX?

Dolores, did you also go through a time where you had lung issues? What was the

diagnosis? And did you go back on Mino after?

Please anyone that has some info feel free to respond. Thanks again everyone.

O

>

> 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

>

>

>

>

>

>

[Guest guest]

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

>

>

>  

>

>

>

> 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

>

>

[Guest guest]

Thanks, Debbie. It is so reassuring to have expert advice. Re: Sjogren's. It is

very annoying...and when I saw a rheumy for the first time ever...rec'd from my

GP because of the dry-everything - he diagnosed it and said it was a precursor,

that I would come down sooner or latr with a rheumatic disease...which I didnt

want to hear and so ignored. It was 7 years coming but boy did it!

For my Sjogrens - I put the Refresh pm ointment under my eyelids at night

....otherwise my eyelids were so dry they would be stuck to my eyeballs in the

morning....had to do drops during the day, again the Refresh were best...and

didn't go anywhere without a bottle of water. Also had to get up a lot in the

night...couldn't hold water in me either. The greatest relief I felt was

intravenous saline solution drip...post surgery,...the regular stuff everyone

gets in the hospital...my body just felt 'quenched' finally. So it may be that a

D.O. or chiro cld periodically do that? Again, it seems that the first thing to

come back...from the lack of Mino...are signs of Sjogrens and some pain in large

joints - hips...and the exhaustion. I dread the brain fog most, I think. But

hopefully can get under control before that happens.

Best,

O

I also agree with diet and nutrition being so critical. I admit to having let

mine slip a bit because I had felt so good (from the Mino) for the first time in

so many years...but I am much better breathing-wise just from cutting out the

dairy and sugar (and p-nut butter).

> >

> > 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

> >

> >

> >

> >

> >

> >

[Guest guest]

LDN cured my dry eye, you might try it!

> >

> > 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

> >

> >

> >

> >

> >

> >