RE: pain and deformaties

[Guest guest]

Cooky,

 

I have an appointment tomorrow with my doctor and will ask about LDN, I have

several issues with the Dermatomyositis and what I have read and heard about LDN

sounds good. I am also talking to my GP to send me to a neurologist because of

the Dermatomyositis, which has caused muscle weakness in my back. Even with the

exercise I have to wear a brace to keep from bending to the right side. I also

have Ankylosing Spondylitis which doesn't help the situation.

Take care,

Eva

From: Cooky Stonkey <cookee1@...>

Subject: rheumatic pain and deformaties

" rheumatic " <rheumatic >

Date: Thursday, March 5, 2009, 4:11 PM

Hi group,

I love all the info about LDN and I was asked if I would like to try it

about a year ago and have been on the fence since. My question and the

question all of you only going on LDN without Minocin is.is the disease

still progressing? Adding Minocin or another antibiotic will stop the

progression at least that is what happened to me and I have been on AP for

11 years. I have been reading about those of you who were on Minocycline and

it stopped working. Being a nurse I would say .try another antibiotic

because you may have either picked up another myco and the other myco is not

a myco that responds to that drug. Or switch to nongeneric. I would also add

Penicillin to address other bacteria not mycos. Try adding Zithromax or

Biaxin. I had to do Clindamycin IV's. But that is easy for me to say since I

have a doc that will listen to me. The thing is I would never stop a

tetracycline antibiotic and do JUST LDN. This is my own opinion.

cooky

[Guest guest]

Good luck Eva. Maybe look into something for muscles. How much protein do

you eat? Can you do exercises for the Spondo?

cooky

From: rheumatic [mailto:rheumatic ] On Behalf

Of Eva Holloway

Sent: Thursday, March 05, 2009 5:39 PM

rheumatic

Subject: Re: rheumatic pain and deformaties

Cooky,

I have an appointment tomorrow with my doctor and will ask about LDN, I have

several issues with the Dermatomyositis and what I have read and heard about

LDN sounds good. I am also talking to my GP to send me to a neurologist

because of the Dermatomyositis, which has caused muscle weakness in my back.

Even with the exercise I have to wear a brace to keep from bending to the

right side. I also have Ankylosing Spondylitis which doesn't help the

situation.

[Guest guest]

Cooky,

I do exercises the physical therapist showed me and I have one of those large

Pilates Ball they make me bounce on it for about ten minutes every day. It helps

to make me sit straight.

I do have protein every day and I also take l-lysine which helps with the

protein. I take cal-mag with boron, Vit D3, and a few other supplements

I realy don't have a lot of pain but I am weak. I walk about two miles a day, I

know that is not much but it is better than none.

 

Eva

From: Cooky Stonkey <cookee1@...>

Subject: RE: rheumatic pain and deformaties

rheumatic

Date: Thursday, March 5, 2009, 4:44 PM

Good luck Eva. Maybe look into something for muscles. How much protein do

you eat? Can you do exercises for the Spondo?

cooky

From: rheumatic@grou ps.com [mailto:rheumatic@grou ps.com] On Behalf

Of Eva Holloway

Sent: Thursday, March 05, 2009 5:39 PM

rheumatic@grou ps.com

Subject: Re: rheumatic pain and deformaties

Cooky,

I have an appointment tomorrow with my doctor and will ask about LDN, I have

several issues with the Dermatomyositis and what I have read and heard about

LDN sounds good. I am also talking to my GP to send me to a neurologist

because of the Dermatomyositis, which has caused muscle weakness in my back.

Even with the exercise I have to wear a brace to keep from bending to the

right side. I also have Ankylosing Spondylitis which doesn't help the

situation.

[Guest guest]

You are doing great Eva! Two miles a day.I don't even do that.!!

How old are you? Menopause age?

The weakness will get better. I could hardly turn a knob to open adoor. I am

62 so I do have a little weakness and I think this is from age.

From: rheumatic [mailto:rheumatic ] On Behalf

Of Eva Holloway

Sent: Thursday, March 05, 2009 5:56 PM

rheumatic

Subject: RE: rheumatic pain and deformaties

Cooky,

I do exercises the physical therapist showed me and I have one of those

large Pilates Ball they make me bounce on it for about ten minutes every

day. It helps to make me sit straight.

I do have protein every day and I also take l-lysine which helps with the

protein. I take cal-mag with boron, Vit D3, and a few other supplements

I realy don't have a lot of pain but I am weak. I walk about two miles a

day, I know that is not much but it is better than none.

[Guest guest]

Good for you Eva.  I'm unable to go from the front door in our home to the back

of the house where our bathroom is.  So walking 2 miles seems a lot to me.

Marj GentleDeer EagleSong Winston

 

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Helping Pine Ridge Reservation, one donation at a time!

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" Only if we stand together as one people can we hope to overcome all the

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stand as one people regardless of our personal differences. "  

Strong Heart Woman

From: Cooky Stonkey <cookee1comcast (DOT) net>

Subject: RE: rheumatic pain and deformaties

rheumatic@grou ps.com

Date: Thursday, March 5, 2009, 4:44 PM

Good luck Eva. Maybe look into something for muscles. How much protein do

you eat? Can you do exercises for the Spondo?

cooky

From: rheumatic@grou ps.com [mailto:rheumatic@ grou ps.com] On Behalf

Of Eva Holloway

Sent: Thursday, March 05, 2009 5:39 PM

rheumatic@grou ps.com

Subject: Re: rheumatic pain and deformaties

Cooky,

I have an appointment tomorrow with my doctor and will ask about LDN, I have

several issues with the Dermatomyositis and what I have read and heard about

LDN sounds good. I am also talking to my GP to send me to a neurologist

because of the Dermatomyositis, which has caused muscle weakness in my back.

Even with the exercise I have to wear a brace to keep from bending to the

right side. I also have Ankylosing Spondylitis which doesn't help the

situation.

[Guest guest]

Cooky,

 

I am 67 and realy didn't get hit with this problem until 2005 and then the

rheumy gave me all the hings that are bad for me. Cytoxen, Cellcept, Prednison

and Enbrel. All that caused so much havoc with my body and plenty of infections

and funguses around my body.

I have been on minocylin and Biaxin for about one year, but it is a very slow go

and I do get discouraged.

I went menopausel at the ripe of age of 30 and never even could take hormon

pills, gave me a real bad headache. Had about 100 fibroid tumors removed at that

time and everything else went bye,bye. LOL:)

 

Regards,

Eva

,

 

From: Cooky Stonkey <cookee1@...>

Subject: RE: rheumatic pain and deformaties

rheumatic

Date: Thursday, March 5, 2009, 6:00 PM

You are doing great Eva! Two miles a day.I don't even do that.!!

How old are you? Menopause age?

The weakness will get better. I could hardly turn a knob to open adoor. I am

62 so I do have a little weakness and I think this is from age.

From: rheumatic@grou ps.com [mailto:rheumatic@grou ps.com] On Behalf

Of Eva Holloway

Sent: Thursday, March 05, 2009 5:56 PM

rheumatic@grou ps.com

Subject: RE: rheumatic pain and deformaties

Cooky,

I do exercises the physical therapist showed me and I have one of those

large Pilates Ball they make me bounce on it for about ten minutes every

day. It helps to make me sit straight.

I do have protein every day and I also take l-lysine which helps with the

protein. I take cal-mag with boron, Vit D3, and a few other supplements

I realy don't have a lot of pain but I am weak. I walk about two miles a

day, I know that is not much but it is better than none.

[Guest guest]

OK, so I'm guessing you need to get on some Diflucan for a loading dose(big

bunch) for all the fungus you have accumulated. If your doc agrees .100mgm 2

times a day for a week then Nystatin 1 pill 3 times a day for a week. Back

to the diflucan but only once a day for a week then Nystatin for a long time

..maybe a month. Off and on like once a week Diflucan 100mgm once a day.

Nystatin kills fungus in the gut where you are probably having a party for

the little buggers. Diflucan is less corrosive to your liver than all the

other antifungals. I have done this in the past..not for taking Minocin but

for a problem I had so I know this works. I could almost bet this will kick

start the Minocin again. It will also help the tiredness. You do take

acidophilis I am assuming??

There is a web site for neurotoxins and I did the test there. I definitely

had it and the cure is a large amount of amino acids. I am also on Deplin

which is Folic acid in very large amounts. The deplin really made my energy

soar. If you have a GNC get a bottle of amino acids and take them as

directed. Add 800micrograms of folic acid daily (for a few weeks) to the

amount in the amino caps. This actually may help. Are you anemic or have low

B12? Also see if your doc will do a FERRITIN level.make sure it is not an

iron test like CBC or red blood cell test. My ferritin level was sooo low I

was cold between my hot flashes!

Just a few things for you to think about. I'm not a doc only an RN but I

have been at this for a long time. Don't feel bad if you decide not to try

this. I also know most doc's will not order that much diflucan I had to see

an alternative doc to get it.

Goodest Luck and keep me up to date on how you are doing. Write me at

cookee1@....

Cooky

Cooky,

I am 67 and realy didn't get hit with this problem until 2005 and then the

rheumy gave me all the hings that are bad for me. Cytoxen, Cellcept,

Prednison and Enbrel. All that caused so much havoc with my body and plenty

of infections and funguses around my body.

I have been on minocylin and Biaxin for about one year, but it is a very

slow go and I do get discouraged.

I went menopausel at the ripe of age of 30 and never even could take hormon

pills, gave me a real bad headache. Had about 100 fibroid tumors removed at

that time and everything else went bye,bye. LOL:)

Regards,

Eva

,

.._,___