ANA

[Guest guest]

,

I was also having severe esophagus (reflux) problems as a part of some kind

of multi-symptom reaction to who-knows-what. I went in Tuesday to see an

internist on an emergency basis. He prescribed Omeprozole, also known by the

brand name Prilosec. He said if it didn't work, (it did) I would have to be

checked for an ulcer. He also told me to stop taking the minocycline, which,

of course, I didn't do.

Maybe you could get in to see a non-specialist who would prescribe something

until you can see the gastro-enterologist?

Ann

[Guest guest]

Hi, ,

Wow! It really does appear that it was an effect of steroids. It can't be

very serious if it can disappear this way for several days. Very good news,

I would think.

When you said you were teaching, I was shaking my head in amazement that you

managed to keep on doing it through all of the nastiest stages of this

disease.

I retired after 32 years of teaching high school English. I was very lucky

that the arthritis didn't strike earlier. Someone should pin a whole lot of

medals on you--you are surely an example of " the right stuff! "

Ann (In Awe)

[Guest guest]

Hi --I can hear how upset you are by your ANA results. But don't put totally stock in them. Firstly, it could possibly be a lab error. Secondlu, ANA does not always correspond to how one may be feeling. If you were told that your ANA was negative, would your symptoms be any different? You know how you are feeling independent of what the ANA shows. I hope you get some answers regarding the inc ANA but don't anticipate that this is something dreadful.

Love

Carol

[Guest guest]

Hello ,

Had you discontinued the antibiotics altogether or have you taken minocycline

all the way through?

Don't panic - just restart the antibiotic regimen you were on before. Very few

people can discontinue the antibiotics and remain well. Some can, but even of

those who have completely regained their health as far as symptoms go, most

find they need a low maintenance dose to avoid their symptoms slowly returning.

I heard from Craig a while back - his story is at rheumatic.org/craig.htm

for those who haven't read it. He went from being almost totally crippled with

scleroderma, including legs, arms, everything totally bent with gross damage,

to being able to go mountain-bike riding and feeling completely well. He was

a 'miracle' in his home town. He discontinued the antibiotic eventually and

remained well for years. But recently he said he is feeling the Raynauds' tingle

in his fingers again and has now gone back on a very low dose of minocycline.

Seems it's so hard to kill off those last organisms and they hide there and

slowly start multiplying again. Hence the need to continue the antibiotics.

Chris.

>Dear Group,

>I have been remiss in not writing lately...or even reading so many of

>your stories, and now I come with my problem. I feel like I should

>not be posting.

>But first let me tell you what I have been doing that has kept me

>from you all.I built a website and get letters daily from people

>asking about treatment. I have sent so many people to join you. I

>have also been working to build a e-mail suppport group for people

>with Mixed Connective Tissue Disorder, a form of Scleroderma with

>some Lupus thrown in.

>I finally thought I was in " remission " from the disease. All the

>antibiotics and photopheresis should have finally gotten the dreadful

>Scleroderma out of my system. My ANA had been normal for about six

>months.

>But last Saturday I recieved my most recent ANA. It was 1260...as

>high as it had ever been!

>I have been devasted. I dreamt that a tidel wave was coming over me.

>Although I did finally get out of its way, it was very scary.

>All this is to say I am one worried puppy.

>Has anyone else had thier ANA do this? Go down to normal then up

>again. Does it ever finally stay normal?

>I have started my clindamycin again this week. Perhaps it will drop

>again. Perhaps it was a lab error?

>I hope you are all well, Thanks for listening (or should I say

>reading)

>

>

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

,

My ANA came back negitive also these test are NOT 100% reliable. Sometimes you have to be tested several times for it to show up. You know your own body and what is going on with it better than some test does!! I have to go I have a doctor's appointment myself today.. Yea!!!!! What a thrill!!!!

Peace,

Sherry

Hi --I can hear how upset you are by your ANA results. But don't put totally stock in them. Firstly, it could possibly be a lab error. Secondlu, ANA does not always correspond to how one may be feeling. If you were told that your ANA was negative, would your symptoms be any different? You know how you are feeling independent of what the ANA shows. I hope you get some answers regarding the inc ANA but don't anticipate that this is something dreadful. Love Carol To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi Gloria,

Craig recovered on tetracycline and IV clindamycin.

A maintenance dose of minocycline is about 100mg MWF. Some people get by on

50mg MWF.

Chris.

>Hi

> Did this man get rid of his scleraderma damage and symptoms with just

>minocycline?

>What would be a very low dose that he had to go back to after the symptoms

>of raynauds returned?

>Thank you,

>Gloria

>

>

[Guest guest]

Hi Marc, Good to hear from you. How is ? I remember you were so sick in the beginning. Thank you for writing. Actually the thing that finally brought my ANA down to normal may have been the photopheresis...or maybe the combination of the antibiotics and photopheresis. I did get my clindamycin recently and do feel better again. I can corrolate my ANA #s with how much my raynauds is acting up. Can you?

It is amazing that the VA can't be convinced of the need for antibiotics. My greatest fear is that the government will run medicine and we won't be able to get our medicine.

My pulmonologist too is impressed with how well I am doing. He promised if I my rheumy who gives me antibiotics retired he would continue the antibiotics.

In a message dated 04/13/2001 11:20:38 AM Eastern Daylight Time, Marcor writes:

,

I too have "stayed low profile" and sent many to the site. My ANA went to 2520 during my worst times, however, I've had to go through the VA for meds and they will not support the AP so I can't get them to test the ANA. To make a long story short, I got a respiratory infection and they wrote it off as a case of end stage SSC. During that time I spiked to 1260 after having gone down to 320. We are convinced that it was the result of becoming lax with the IV's and even the minocin. I had been doing well so I backed off to every other instead of daily. After a few months I ended up with the respiratory infection and they felt I was a Hospice case.

Fortunately, my wife and I decided to "go after" the infection with the IV's. After two weeks of twice daily IV's(coughing up phlegm and infection) followed by a two week herx I gradually came out of it and now they can't believe how well I'm doing.(THEY being the VA rheumys) They will only help with pain management and still will not support the AP. We have a different GP that writes for the Cleocin and minocin(we pay for that)

Anyway, I wanted to respond to your question about rising ANA because mine resulted from becoming too complacent with the AP regimen and I am now doing very well despite being diagnosed with Pulmonary Hypertension as well. I hope this finds you improving and keeping your spirits up. You can forward this to the group if you don't mind. I was motivated to write to an "old-timer", but this should probably go to them as well.

Marc Holland SSC 5 yrs AP 4 yrs and still humming right along!

[Guest guest]

I was wondering if anyone had info on what the ANA means. Mine was 1:80 homogeous speckled pattern...doc says normal..I am questioning all of this.

Toni

[Guest guest]

Hi Toni Beside the Positive ANA test, do you have any symtoms? Have your doctor send you antibodies tests? Dallyaclavern33@... wrote: I was wondering if anyone had info on what the ANA means. Mine was 1:80 homogeous speckled pattern...doc says normal..I am questioning all of this. Toni

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[Guest guest]

Dally,

She claims all the other tests were normal. Even the elevated Sed rate in the 30s she says is normal. Yes, I do have symptoms, joint pain constant achiness in various areas. fatigue, pain, swelling and redness at times.

This is suppose to be one of the best in the area. Large medical center. But quite frankly I think they are all quacks!

Toni

[Guest guest]

Hi Toni I was very frustrated at the beginning. But last week I had another flare. This time I showed up at the doctors office with all my pains and swelling and rash all over my face. My doctor could not beleive it. Eventhough most othe the tests were normal my ANA test was high and the bone scans showed I have arthritis all over my body. For my surprise, instead of telling me it was RA I was diagnosted with Lupus with arthritis and fibromyalgia. I took me years to finally know what was wrong with me!! Try to make notes of all the symtoms you might develope even if you think is nothing and find a doctor that LISTEN to you. Hope you start feeling better. Dallyaclavern33@... wrote: Dally, She claims all the other tests were normal. Even the elevated Sed rate in the 30s she says is normal. Yes, I do have symptoms, joint pain constant achiness in various areas. fatigue, pain, swelling and redness at times. This is suppose to be one of the best in the area. Large medical center. But quite frankly I think they are all quacks! Toni

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[Guest guest]

I should add as well all these woman are under 35 so it would not be

ageing that is affecting it. I don't think it's the ANA that grew as

much as the antibodies each person had. The one lady had her ANA

double but that is just one dilution it's the antibodies that are

growing by leaps and bounds which is not good

> >

> > Hi, other things can affect the ANA besides having an autoimmune

> disease, these include Reynauds, 's, liver and thyroid

> disease, some viral infections, also, older adults can have higher

> ANA - especially women.

> > In addition, certain medications may cause a positive antinuclear

> antibody test. These include:

> >

> > a.. Methyldopa (Aldomet)

> > b.. Tumor necrosis factor (TNF) blockers, such as etanercept

> (Enbrel) and infliximab (Remicade)

> > So, perhaps more testing is in order with a full evaluation of

> bloods, present health status, and drugs being taken.....

> >

> > Best

> > Celia

> >

> >

> >

> >

> > Hi there,

> >

> > I have a question for people who have researched ldn. I have

> several

> > people who are taking it now at my recommendation. Two with

lupus

> and

> > one with sjogrens. Well one of the lupus people and one of the

> sjogrens

> > people have since had blood work done that now shows an

increase

> of

> > their ANA and an increase in their antibodies. I am not sure

what

> to

> > tell them. I assumed the ldn would reduce not increase them.

Has

> anyone

> > experianced and increase in their disease since starting ldn? I

> am

> > wondering if anyone has gotten worse and not better?

> >

> > I am just not sure how to explain this to them

> >

> > Thanks

> > Celia, Scotland.

> > celia@

> >

>