Re: Had to stop my AP therapy To O and agentbleu.

[Guest guest]

Hi O,the quiet one.  You touched my heart strings with your post.  As you

already know, my lungs were so sclerosed that my docs (group of 5) said they

could keep me comfortable with steroids and chemo, but that I probably had 5-6

months left to live at the rate that my lungs were deteriorating.  That was in

2005.  What helped me to make the decision to say no to that  is that I had a

cousin with Lupus years back and those are the meds they offered him and he died

shortly thereafter. That was around the same time I heard about the A/P and so I

embraced it.  We flew to Boston with paper sack in hand in the event I would

lose lunch or anything else in my stomach.   

 

In my humble opinion, I think you may have stopped the mino a bit too early and

the bacteria/virus had a chance to regroup.  The next time around is always

worse.  It may have been you developed an allergy to the antibiotic. Sometimes

Doxy and Clindamycine help. Some people take clindy IV when they can't tolerate

it by mouth.    But that is the past. 

 

You do right to ask Debbie about photophoresis.  She knows a lot more about

lungs and their involvement than I do. I got lucky in that my lungs started

responding to the Mino right away.  The rest of me was not so quick to respond,

but I waited for that to happen and eventually the symptoms, one by one fell by

the wayside with some minor setbacks, but I never stopped taking my Mino, even

when I was violently throwing up the pills as fast as I had taken them.  I would

just wait a bit and swallow another one. When i reached a plateau, I was not

satisfied. I wanted the cure.  By then I had read the books by Dr. Brown & Henry

Scammell and heard about M/P.   I was determined to get to the source of the

disease and live with the  symptoms knowing they were temporary.  I know what

you are saying about the sheets being painfull.  Nobody could even touch my hand

lightly without me screaming. I would lay in one spot too long without moving

for

fear of the intense pain I would get to just make a bit of a turn or movement. 

It hurt to breathe.  Even my heartbeats hurt within me.  Nobody knows this

unless they have experienced this. I was taking the Brand name Mino.  And I

swallowed them even when my stomach refused to take them in.  I swallowed them

with aloe juice and anything else that would keep them down.  But that is all 

in the past.

 

Being without insurance is a bummer!  Can you apply for medicare or medicaid or

both?  You really need to get those lungs back into shape again, quickly.  Can

you get a hold of a social worker that will work for you to receive the help you

need.  I know that when my heart was being attacked, I had already had 4 heart

surgeries & many procedures that required hospitalization.  The day before the

cardiac ablation  was scheduled, I had fretted so badly, because I knew my

insurance wouldn't cover me and my CC bills were climbing past my head.  So, I

had my husband push me down to the social worker's office.  Most major hospitals

have someone there to take care of these matters and she got me covered

instantly and I got thru the surgery just fine with peace of mind and that is a

big leap. 

 

Dr. Whitman is good.  I went to him for a while, but quit when he wouldn't go

along with my idea of getting on the Marshall Protocol...He was against me

taking the Benicar at full doses .  It is a scary thought and he was not

comfortable with it,  but I was determined and so we parted ways.

 

What you need now is a good pulmonologist. Maybe someone on this site from your

area can recommend one.  I know what it is like to have to fly or drive while

being too sick.  I was in a vehicle driving past Washington, D.C, with a basin

in my lap.  It is no fun at all. 

 

Checking out Agentbleu's allergy free info is a very good idea.  The offending

bacteria/viruses has made your body super sensitive and so the antibodies you

are building up to fight off the antigens are at war.with each other.   Maybe by

getting that calmed down without prednisone or maybe just using a decreasing

low dose for a week or so may just slow down the inflammation long enough to get

those antibiotics back to working again.  I did resort to that once during a

violent asthamtic attack.  I used to have them often.  I was hospitalized too

many times for them.  I have not had an asthmatic attack in 6 years since going

on the antibiotic.  When you are able to take the antibiotics again, try to stay

on them no matter what.  Even now in remission I take half dose three times a

week for precaution.  I say the word " When " , because I firmly believe you

will be able to get back to some form of tetracycline therapy once this flare

with

the lungs is past. 

 

I believe Debbie can explain why she used photophoresis,  She explained it to

me, but not having experienced it,  I cannot really totally understand it fully

enough to explain it.   As far as LDN, I haven't had to use it, but understand

that one cannot use it while taking pain killers.  You would have to ask Eva

about that. I think she is waiting to get off the pain medication from the

surgery before resuming the LDN. She has been taking it and now, I think on hold

because she is  recovering from hip surgery. 

 

My suggestion is to find a pulmonologist who has an office in a building complex

and is possibly friends with an infectious disease doc. in the same complex.

 Hopefully they will be friends and between the two they could get their heads

together to get the body to accept the antibiotics to get those lungs from

deteriorating further.  If they hospitalize you, have someone wheel you to the

social services office and just announce like I did that you just can't afford

the cost.  I was too sick at the time to go into detail, so when my husband

pushed me into the social services office and the lady looked at me, all I said

is that I am scheduled to have heart surgery in the morning and I can't pay for

it.  She didn't ask me another question.  She just took our the forms. We filled

them out and I was done in a few minutes.  The difference between a social

worker at the hospital and the social worker at a government office is that the

social worker

at the hospital is there to see that the hospital gets paid.  She works for the

hospital.  The social worker at the government office is working for the

government and they are there to deny claims so that they don't have to pay. 

You learn a lot of things when this stuff is happening to you.....Good luck to

you.  First thing you need to get those lungs breathing correctly again. 

Nothing else will work without the oxygen you need for survival.  Stay in

touch.  I want you to live.  My best to you, and thank you for the kudos.  You

are not alone.  It is the least I  and others can do to pass along our

experiences so others will survive, heal and help others down the line someday. 

We need more togetherness in the world today. Luckily, we live in the age of the

internet.   Stay in touch and let us know how this works out for you. Our best

wishes and hang in there.  Dolores          

> 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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