Re:Elimination

[Guest guest]

I use " Miracle Fiber " @ the Vit Shoppe, $7.99 for 8 oz.  I add and mix 1 tea or

Tble to my oatmeal and than add water.  It is tasteless and is not slimy etc.  I

don't even know it is in the oatmeal. 

 Josie (Dallas TX)

________________________________

From: " mannasal@... " <mannasal@...>

rheumatic

Sent: Mon, September 6, 2010 3:46:47 PM

Subject: Re: rheumatic Re: Had to stop my AP therapy -sorry - another long

post

Good Lord O....when does this end!  I relate to your RA and all the stuff

that comes with it.  And how lovely that you went out!  Can't address your

concerns below....but do contact someone at Human Resources to see what is

available for you.  In Iowa, I got qualified for Ia. Care Ins. right away....I

didn't have insurance.  Then I got food assistance, then utility assistance,

then this, then that..........and yes so humbling as I've always worked and

taken care of myself, paid taxes, etc.  But by getting the help, it did take

some stress off of me (I also live alone)  I'm having couple rough

days.....hopefully die off??  Now big boil on my shoulder blade (toxins coming

through skin)  i feel so toxic...my elimination poor (any help with this?) and

drinking tons of water.  Along with all the challenges we share on this

site....please for those of you, keep sharing your successes! I/we need them!! 

Sally...hard to type, and i don't even care to run spell check!

rheumatic Re: Had to stop my AP therapy -sorry - another long post

Hi, Dolores. Thanks for all the info...you are a treasure...for your kindness

and the information you share.

I appreciate all you have mentioned. I will try to get a PFT done, hopefully

free. And I will increase my efforts to get some medical assistance. It is

embarrassing, though I know I should not feel shame if I need the help. And I

do!

I did not want to stop the Mino...I am choosing to not take the ABX ONLY because

I fear not breathing worse than the RA pain. But as I said I tried to see if I

could just cut back instead.

I did take in the allergy info from you and Agentbleu. I had it in my mind when

I went on a rare outing to a baseball game last night. I thought it may be good

to get my mind off my health and body...it just takes up so much energy! I got a

pack of peanuts. Without thinking about an hour into the game I started getting

the breathing problem and could hardly catch my breath. I thought I may have to

go to a hospital right then. It was scary...but made it home.

I woke up this a.m. feeling better...no wheezing, no pressure/congestion. So I

remembered the allergy info. And recalled the events of the

night...peanuts...something that is especially allergy inducing once your body

is super sentitized...as you explained in your post, Dolores. And I am familiar

with preparation of a wheat free, glutenfree, dairy free, yeast free, and

sugar-free diet for my daughter who suffered for her teen years with allergy

problems. So had not considered this in regards to my own condition. The little

light bulb went off, put 2 and 2 together, and today I put myself on this diet

to see what would happen with my breathing and congestion. Cut out dairy and

sugar.

I actually responded, feeling better and breathing with very little difficulty.

In fact I felt so much better that I decided to make one more test of the

Mino...as I am so reluctant to go back downhill (as I have started doing). Not

wise. So one hour after taking the Mino I started feeling pressure and

congestion in my lungs. I still do and it has worsened since then..and it is 8

hours later. So I can only relate it to the Mino. So I will go get a PFT. And

see if LDN can help. Once I desensitize my body with nonallergenic foods..I have

hopes to get back on Mino...maybe not allergic forever.

But I have one more thing to relate...and it has me quite concerned.

If anyone has experienced this please let me know what it is. I woke in the

middle of the night (not unusual) but have been having pain twinges in my heart,

esp after dropping the ABX. Some of the pain is sharp and sometimes goes up what

feels like my carotid artery. When I woke last night I heard/felt a " thwak "

actually in my heart. It was just as though a rubber band broke in my heart. I

laid there, still, waiting to feel a rush of blood through the heart or sudden

heart attack, and was thinking " well, this is it " ...and then nothing... No pain;

maybe, maybe a slight warm feeling? Anyway I laid there and thanked God for the

life I have had and then went back to sleep!

I woke wondering if it really happened...and know it did, but seems so surreal.

But I guess nothing surprises me anymore living with RA for 3 years. Later today

after taking the Mino I started having pain in my heart again, along with the

breathing problem.

Can anyone guess what happened? Anyone felt this? I am thinking I need a cardio

workup along with the Pulmonary test...but...money, time... I am wondering if

the mycoplasms have now gone for the heart...

That's it. Thanks again for listening. You are wonderful people.

O

>

> > 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

> >

> >

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