Re: To A/P for how long? That is the question Amy put to us.

[Guest guest]

Great to read your post. I was just diagnosed officially in Boston this past

Wednesday - diffuse scleroderma- took 7 doctors, and nearly 9 months later

for the diagnosis, but I myself have known for seven months now - very

frustrating. The Dr. in Boston put me on minocycline 2X daily, and that was it

-

follow up in 4 months - wonder if this is enough. I asked him for IV

antibiotics,

and he said that was a thing of the past, and not necessary - I guess I have

to trust someone. Any input or suggestions anyone could give me would be much

appreciated. Open to anything and everything. I'm with you - I want to live

as well! Gail

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

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[Guest guest]

Hi Amy, I am not a doctor and I can't prescribe. What I can tell you is my own

experience which is unique to everyone else's experience. I was bedridden for 8

months. Lost 40 lbs and had diarrhea and vomiting every day. I was anemic and

had pulmonary fibrosis. I was away from home when I got sick and couldn't get

back. Finally, we got me on a plane and when I got to NYC, I went to NYU and got

sent from specialist to specialist. No one gave me any hope and I was told I

would not last long in my condition. My husband swore I had cancer and he cried

everyday. He had to carry me to the bathroom and we didn't lock the door because

my hands could not turn the door knob. I layed in bed with gloves on. My

Raynaud's was constant. One day, I mustered up enough strength to go to the

computer and I sent a desperate post through the S/D Foundation Bulletin Board.

Lynne G. happened to be browsing and she picked up my desperate SOS. Within

minutes, she told me about A/P. I knew

I was dying and someone threw me a life line. I didn't question it. We flew to

Boston, got my Minocin and within a few months, the Raynaud's lifted, the anema

left, I got out of bed and started gaining weight through sipping Whey Protein

drinks. I went through several huge cans of the stuff. I stayed on that

Minocin till I reached remission 18 months later. I had no other choice. I am

fine now and on the Marshall Protocol which is more Minocin, with other added

drugs. In 3-4 years, I am supposed to be cured of my Systemic Scleroderma, R/A

and MCTD. I am a successful experiment so far. You ask how long. Howeverlong

it takes. I want to live! Dolores

Amy <Evanesce@...> wrote: Snipped to death by Amy

mike rosner wrote:

>

> Studies coming out show that Minocin is the drug of choice for these

> micoplasmas. It blocks their elimination. At least that is the way I

> read it. They are doing studies with Lupus and Mino now.

>

** Mino blocks mycoplasma elimination? What does that mean?

> Now Amy brings out the point on how long should we try it before

> giving up.

>

** I didn't mean 'give up'. I only meant how long should I wait before

switching to a *different* antibiotic. It's hard to know which

antibiotic is THE one to work.

> Good question, it varies. Because we all don't carry the same

> microbes, there is no set time. Some have more bugs than others and

> different kinds. Each person's response is also different. Some people

> heal faster, because their immune system is stronger. Other's may have

> overlapping diseases and conditions that hamper progress. Age, diet,

> exercise, lifestyle are all contributing factors.

>

** These are all very important points!

> But you don't just wake up two years later in remission. You start to

> see changes along the way. For some, Raynaud's will disappear first.

> For others, it could be joints, and other's will still be blowing

> their noses constantly for several years while they no longer need

> pain pills. Other's have a problem with digestion and others with

> headaches, or heart- lung, difficulties. We are all unique. The main

> thing is that to go back to the 1940's medicine is ludicrous. It

> didn't cure then and it will not cure now. It killed then and it will

> kill now. These diseases are disfiguring and terminal. So, what have

> we got to lose by trying them?

>

** This tells me I should notice SOMETHING (besides herx)... maybe

within 3 mos.

> Sick people keep the industry going. Why should they cure us? HUH!

> $$$$$-It's up to us to take charge of our health care system. I

> reached remission in 18 months. Others are more and some are less

> fortunate than me. I did see changes along the way. Monitor yourselves for

> the answers and share the info with us all.~~~Thanks for allowing me

> to spew. It's what I do best. Hope the best for all of you,~~~me, and

> everyone else within ear shot. Dolores

>

>

I strongly agree with what you've said.

Amy

[Guest guest]

If you saw Dr. T. in Boston and he put you on Minocin 100mg twice a day, then

you are in good hands. He's my doc. I flew to Boston from NY. I was too sick

to stand up and 4 months later, I was on my way up, healthwise. I hope it works

for you as well. You know everyone is different. Now start a journal and update

it whenever you notice you can do something that you couldn't do before.

Healing is subtle and we often don't realize it until we find ourselves in a

position we couldn't get to before. I remember being so surprised when I was on

the floor looking for a book on the bottom shelf. I found the book and without a

second thought, got right up and that's when I realized I had crossed another

threshold. That was an aha! moment. ~~~~I love those.~~~~Take care and keep us

in touch with your aha! moments and even when you have those two step back

moments. They have a way of sneaking in there too. ~~~Remember, this healing is

slow~~~~Someone once said to me, this is a

one step forward and two step backward type of disease while we are healing, we

sometimes feel sicker. That is because these CWD micoplasmas emit a toxin as

they die off. They are nasty critters. Patience is a must. When you are down,

just write. Someone on this board will help you! That's what's so great about

these support groups. ~~~Dolores

ONYX8257@... wrote: Great to read your post. I was just diagnosed

officially in Boston this past

Wednesday - diffuse scleroderma- took 7 doctors, and nearly 9 months later

for the diagnosis, but I myself have known for seven months now - very

frustrating. The Dr. in Boston put me on minocycline 2X daily, and that was it -

follow up in 4 months - wonder if this is enough. I asked him for IV

antibiotics,

and he said that was a thing of the past, and not necessary - I guess I have

to trust someone. Any input or suggestions anyone could give me would be much

appreciated. Open to anything and everything. I'm with you - I want to live

as well! Gail

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

Thanks Dolores for you answer - it was very helpful. Yes, I did see Dr. T in

Boston, so I am glad that you are happy with him as well, and I look forward

to those aha moments as well! Thanks again. Gail

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)