seeing results

[Guest guest]

Dawn -- how wonderful to see results! I hope she is still tolerating the

helmet ok, too. Do you know how much longer you have to go?

-----Original Message-----

From: Dawn [mailto:cateyes78@...]

Sent: Thursday, April 06, 2000 8:49 PM

Plagiocephalyegroups

Subject: seeing results

Hi everyone! is' head is rounding out!!!! Im so excited becauseI was

beginning to have my doubts. And her ears are even starting tolign up!!!!

This is such a relief:-)

[Guest guest]

Hi everyone! is' head is rounding out!!!! Im so excited becauseI was

beginning to have my doubts. And her ears are even starting tolign up!!!! This

is such a relief:-)

[Guest guest]

Belinda.....She's in a helmet and has been in it for about 2 months. Shes just

about ready for a new one. Before we know it, our little ones will be out of

the helmet and have a " round " head:-) How is the helmet working for your

son?Dawn

[Guest guest]

>Shes tolerating it a little better. They made a chin strap for her that

attaches to the back of the helmet also. This helps keep it on and from sliding

down over her eyes. We dont have another doctors appt. until Sept. That will

put her at 20 months. So....I guess we'll see from there:-) How are things

going with Quinn?Dawn

[Guest guest]

Dawn,

The helmet has made

some improvement. We noticed change as early as 2-3wks. I still see

misalignment with ears. They are slowly moving. We are keeping our fingers

crossed. The only problem we have had is due to his eczema. The scalp is

clear were helmet total covers but very irritated were the openings are.

Belinda (Indiana)

[Guest guest]

I take it once a day .. no hex and no pigmentation problems and all the pain is

gone in my hands.. my knee is still not great but it is from an injury. I can go

without any pain meds most days. I still get fatigued but I can handle that.

rheumatic Seeing results

Hi Everyone,

I have had RA for 30 years and the first time went into remission after about

15 years. I

refused the heavy drugs and used strict diet controls and paracetamol only but

got joint

damage. I developed bursitis in both shoulders 3 years ago and 12 months ago

after

major stress the RA returned in full force in most of my joints from my jaw to

my toes. I

had to stop work (I'm an artist) and life was miserable.

I found this list (blessings to you all) and started on the minocycline in

October after my

rheumatologist insisted on methotrexate (which I refused). I have been taking

100mg

MWF. I've also been very conscious of diet - no gluten, dairy or sugar. People

tell me I look

very healthy!

In January suddenly all the pain in my muscles disappeared and the joint pain

is minimal. I

can swim freestyle for the first time in 3 years (breaststroke is still a bit

painful) and am

looking forward to eventually being able to regularly swim across the

beautiful Byron Bay

and see all the sea creatures again as I used to do. I'm walking lots too

though get

fatigued after half an hour. And I can paint and type again!

I've been on sulfasalazine, Plaquenil, Prednisone, Naprosyn and Nexium for 12

months.

Had an extreme reaction (suicidal depression) to the sulfasalazine and

substituted

Plaquenil. Now I'm only using Plaquenil and minocycline with the occasional

paracetamol.

I'm trying to decide whether to go to 100 mg daily to see if the twinges go

away. My joints

are still a bit swollen and I get pain when I strain them, eg, take off tight

jar lids. I've

stayed on the MWF regime to try to avoid the Herxing and so far it's been

fine.

Now though I have had itchy skin and nausea for about two or three weeks. The

nausea is

better the day after I use laxatives. Psyllium and prune juice doesn't help

move things

along. I thought it may be a herx but read of others who have gut motility

problems too.

My GP, who knows nothing about antibiotic therapy but is watching with

interest, says it's

the drugs making my stomach 'cold' (he's a Chinese medicine practitioner too)

and to try

to go off the Plaquenil.

I am also reluctant to go to 100 mg daily because I fear the

hyperpigmentation. Has

anyone here been having minocycline long term and not had pigmentation

problems? I

don't think it affects everyone does it?

I wish I'd started the minocycline earlier but better late than never! My GP

and rheumy say

it might be the Plaquenil kicking in after 7 months. I guess I'll only know

when I stop the

Plaquenil and see what happens. It's very scary to contemplate but I'll

eventually get there.

I think I'll wait until I've been painfree for a few more months.

QUESTIONS: I'd like to hear from anyone who has experienced nausea after

starting

minocycline and did it eventually go away? Is it generally recommended to

increase the

dose to really hit the RA on the head or is it safer to stay with 3 times a

week? Do many of

you have hyperpigmentation in any form?

I've ordered The New Arthritis Breakthrough from the US (I'm in Australia) but

it hasn't

arrived yet. I guess I'll get some answers there.

I wish more drs here knew about this. I have a friend with Inclusive Body

Myositis who is

now in a wheelchair and have told her what I've read about Zithromax but her

dr wont hear

of it.

Anyway, thanks everyone. I look forward to your advice.

Ros

http://www.sandsartmandalas.com.au

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[Guest guest]

Hi There!!! I have been on Minocin for going on seven years. I use twice a

day, everyday when I am out of remission and once a day mon-wed-fri to

maintain. I have had no hyperpigmentation and I am a really fair skinned

blonde

that would definitely show age spots fast. I do take vitamin c and a

multivitamin everyday. Several on this group have said this helps a lot. I

also

stay out of the sun and never sun bathe as I never was able to tan even when

young. If you stay out of the sun and increase your vitamin C you should

considerably reduce your risk of this. Of course some of us are just

genetically

programmed to get those dark patches as we get older and it really has

nothing to do with RA or minocin at all. Many of my relatives have never

taken

minocin but have dark patches as they age, my sister who has no health issues

is 8 years younger and already has many dark spots. I really attritribute it

to staying out of the sun as much as possible. The minocin may increase ones

risk but so far my measures to reduce them seem to be working. Martha

[Guest guest]

OOps!!! Forgot...I did have nausea for the first month or so on Minocin. I

do take it with soda crackers or piece of toast. Just nothing that is

calcium rich as the minocin will bind with the calcium and not work as well.

After awhile my body adjusted just fine. My doctor who specialized in

antibiotic

protocol started me on 100 mg twice a day everyday and fortunately I never

really herxed. I was also on plaquenil for the first two months and then just

stopped. Plaquenil builds up in ones body over time and also takes time to

go back out so there was not too much problem. If you are willing to try I

would not hesitate to recommend a daily dose of minocin until you are in

complete remission. Martha