Re: Hi Dolores

August 19, 2007

Dolores do you know if there have been any Sjogrens patients on this group and

how they did? Any on at this time? Any people on here suffering from my

dizziness too? When you said you had it was it constant or episodic? Did you

have spinning or more of a motion sickness? Thanks Dolores.

---------------------------------

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when.

August 19, 2007

I meant to send that last message to Dolores specifically not the whole group

because I may have already asked the group this, but since I sent it to all

then anyone who can answer that would be great. Thanks.

---------------------------------

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on,

when.

August 19, 2007

It was spinning and episotic! Dolores

Vicki <genuinelysweet2002@...> wrote: Dolores do you know if

there have been any Sjogrens patients on this group and how they did? Any on at

this time? Any people on here suffering from my dizziness too? When you said you

had it was it constant or episodic? Did you have spinning or more of a motion

sickness? Thanks Dolores.

---------------------------------

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on,

when.

August 20, 2007

hi dolores

can you tell me more re the dizziness you got on minocin? how long did

it last? i take it it went away. i was in remission from RA on mino 200

mg a day and then after 3 years got so sick i had to stop the mino. i

was so dizzy i wanted to vomit and couldn't see straight. i couldn't do

anything. now RA is back and am trying zithro. am herxing pretty bad

right now which i never did on mino.

thanks

monique

August 20, 2007

its so confusing. I know Dolores was helped by Mino for her dizziness which was

episodic and I assume like vertigo? Yet mino can cause dizziness itself. I take

doxy. I have been having problems with non spinning type dizziness, like a

constant non episodic motion sickness. I wonder if AP can help me with this but

I guess only if it is bacteria caused which of course no doc will tell you as

they dont know. They will diagnose you with so many other things first, in my

case 5 different diagnosis with really serious side effects to their meds. So

while I am encouraged that Dolores migrains went away, I too was diagnosed with

migrain, the kind that causes dizziness, mine is just so different from most

peoples which is more like Dolores symptoms. They rx beta blockers and epilepsy

and seizure meds for this. Translation: possible hair loss, weigth gain, reduced

blood pressure and heart rate (mine already low) and much more serious side

effects. I tend to focus more on the ones

that affect appearance but there are many worse ones. So naturally I am hoping

AP helps with both the Sjogrens dryness (so many meds cause dryness) as well as

the constant motion sickness, for so many reasons as you can see.

Sauve <moniquesauve@...> wrote: hi dolores

can you tell me more re the dizziness you got on minocin? how long did

it last? i take it it went away. i was in remission from RA on mino 200

mg a day and then after 3 years got so sick i had to stop the mino. i

was so dizzy i wanted to vomit and couldn't see straight. i couldn't do

anything. now RA is back and am trying zithro. am herxing pretty bad

right now which i never did on mino.

thanks

monique

---------------------------------

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August 20, 2007

Hi, Sorry if you thought that my dizziness was caused by Minocin. My dizziness

started prior to taking Minocin. In my case because I have systemic

scleroderma, I have sclerosis throughtout all my major organs including the

brain. It's not documented as the cause, but I also have spaces in my spinal

chord. It's called syringomyelia. My dizziness came on and left pretty

quickly. But I also get imbalanced when walking and tend to veer. This

started years ago when I first came down with what I suspected was " Chronic

Fatigue Syndrome " . After the minocin, I got double vision for a short time and

that was also a transient symptom that seems to have disappeared as well. Now,

I seldom get dizzy, but that could also be a symptom of my diabetes. I have a

complicated history and don't really know when my disease started. I know only

one thing and that is that with Minocin all symptoms have slowly faded away and

I feel so much better. I'm actually well almost all of my

days.Sorry I can't be of more help to you. We all react differently to

medication. I hope you get well quickly. Dolores

Sauve <moniquesauve@...> wrote: hi dolores

can you tell me more re the dizziness you got on minocin? how long did

it last? i take it it went away. i was in remission from RA on mino 200

mg a day and then after 3 years got so sick i had to stop the mino. i

was so dizzy i wanted to vomit and couldn't see straight. i couldn't do

anything. now RA is back and am trying zithro. am herxing pretty bad

right now which i never did on mino.

thanks

monique

---------------------------------

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January 5, 2008

Yes, I do. I went into the hospital for aches and pains so bad that I cried when

I rolled over in bed. When I got to the hospital, they did a routine chest

x-ray and said I had pneumonia and that they would have to admit me. I was very

surprised because at that point, I had no symptoms of any thing wrong with my

lungs. After a CT-scan on the third day, they entered the room to tell me that I

did not have pneumonia. My relief was short-lived. They said I had Pulmonary

Fibrosis, but they didn't know from what and discharged me. I spent the next 8

months bedridden with excruciating pain in all my joint and then my lungs

started to give me trouble. I happened to be in Florida when I landed in the

hospital in January of 2005 and didn't get back to my apt.in NY until June 2005.

That was 6 months in bed. Then I was another 4 months running from specialist

to specialist getting worse and worse. I went from the bed to the bathroom and

back. That was my life back then. The

diagnosis of Scleroderma, & R/A came in October of 2005, when I was told my

lungs were so damaged that I only had months to live. I was terminal and all

they could do was keep me

comfortable. I went back to our vaction home in Florida alone and went back

to bed. to die. While I was there, one day, I decided to check out some sites

on the computer and found the S/D foundation. I posted my problems on there and

a wonderful lady introduced me to A/P and told me to read the books by Scammell

telling me about the " Infectious Theory " . She also told me about the Roadback

foundation. I read the posts and asked Richie for the name of an A/P doc near

NY. He told me about Dr. Trentham in Boston. I picked up the phone and made my

appointment. This was now December. My husband is Santa Claus during the month

of December and we had 65 people coming to a party in two weeks and I was skin

and bones, sick as a dog, throwing up and diarrhea continuously, using a

nebulizer every few hours to breathe, anemic, weak and my hands could not even

turn a knob. I was afraid to lock the bathroom door because I knew I couldn't

get out. I counted the days till my

appointment. My husband and I flew to Boston. I got my prescription of

Minocin. Started immediately and it's been uphill since. Within two months,

the Raynaud's left, the anema rectified itself, the pains went away, the hands

started to work, Every month I noticed an improvement. To check out if this

was really caused by micoplasma, I had myself tested for micoplasmas and lo and

behold, I was positive for micoplasma pneumonae. I was just tested again

recently and the blood test showed that I had the antibodies which mean that I

had been infected at one time and may still have some floating around. My lungs

are healing as is the fibrosis in my heart and my bladder fibrosis had to be

surgically removed. I am in full remission and probably don't need to do the

Marshall Protocol. But to be safe I want to attack each and every last bit of

micoplasma I may have in my body. I will never again let them take me over like

that. Never! I will stay on top of it till my

dying day. My docs now are amazed at my comeback. I have been left with some

lung damage which I am hoping will repair itself as I heal. My immune system is

up and running again and I am my peppy ole self doing all the things that I love

to do. No more living in bed. I still see my Rheumatologist in Boston once a

year for a check up and my local Primary Care Physician takes care of my normal

needs throughout the year. I am fortunate to have met that wonderful lady who

rescued me. You know her as Lynne G. from Ontario Canada. We have become good

friends and last summer 2006, I had the chance to visit her and her wonderful

husband Santos. Two lovely people and gave them the biggest bear hug. I am so

grateful. I have done lots of research and am presently writing a book. I hope

this story answers your questions. Your swelling will go down. Minocin is an

antiinflammatory as well as an antibiotic. Give it time and remove all the

other antiinflammatories and

steroidal medications, because all they do is cover up the pain, and dampen the

immune system rendering it incapable of doing the job of weakening and killing

off the micoplasma. They are like putting a bandaid on a cancer. Good luck to

you. My New Year Mantra to all of you is Have a Happy, Healthy, Healing New Year

~~~~~My best~~~~Dolores

Ken Pearson <maputo95@...> wrote:

Hi Dolores

Good to know of your improvement.

I really hope the Marshall Protocol will kill off the last of the mycoplasma..

I have increased my Minocin dosage to 100 mg, 2x a day and wonder how long it

will take to kick in, any idea? In fact, I feel better on my 3rd day ot this

regime, but that may be coincidental.

The tendon attached to my thumb seems to have swelled up, restricting movement,

any suggestions, Dolores?

Have you any convincing argument that mycoplasma causes our various conditions?

I'd love to hear it.

Lovely to hear of your escape to the Carribean last winter as Dec/Jan seem to be

the worst months for my RA. Southern California sounds very enticing, away from

those cold, northern states. keep on the outdoor pursuits, Dolores.

Please keep us informed of your progress, please, details, this is most

heartening.

Ken.

mike rosner <martysfolks2004@...> wrote:

Hi Ken, You are very welcome. I started on Minocin 100mg twice a day in January

2005 and went into full remission in May 2007. Went to the doctor in June 2007

and they could find no sign of S/D, R/A, nor MCTD. My doctors were amazed. Since

I had a lot of Minocin, I continued the medication until September 2007 and then

went off for 6 weeks prior to starting the Marshall Protocol. When I started on

the protocol, I was on the Benicar blockade only until October 15, 2007 then

added the Minocin at 25mg every 48 hr. Last month I increased it to 50mg every

72 hr. I will increase it in about two weeks to 75mg. every 72 hr. and then up

to 100mg. At that point, I will start Phase 2 of the Marshall Protocol. I am

still symptom free. No doctor told me to go on the Marshall. It is of my own

doing. I had to really scout around to find a doctor who would monitor me with

the protocol. The reason I am doing this is because I believe that the Marshall

Protocol will continue to

kill off the micoplasmas until there are none left and I will be totally disease

free in a couple of years. In 2005, I was bedridden for 8 months and near death.

The same docs who are amazed gave me months to live. They can't believe I am

still here and doing so well. I have absolutely no pain anywhere and do not take

any pain medication. There was a time when just rolling over in bed was agony. I

cried and cried because it hurt so much. I also had Raynaud's which disappeared

during the third month after starting the Minocin. My recovery was uphill all

the way. I just had the most fabulous New Year's. I partied, drank, and danced

for 12 hours and had the best time of my life. I am old and retired but my zest

for living is great.

There is another lady in London that I e:mail with who has S/D. She is doing

very well also.

She said it was cold in London. We are feeling a cold spell in N.Y. too. I hate

it and wish I was as far south as I can get. Last year, we went to Puerto Rico

and St. Croix. It proved to be a very expensive vacation as we were there from

December to May. I am still paying off that trip, so this year, we can't go

anywhere. I am thinking of making a permanent move to

Southern California, so I can be outdoors all the time. I love swimming, hiking,

biking, and just being able to get around without wearing heavy coats, sweaters,

boots, scarves, gloves, hats, etc: I feel so weighted down with so much clothing

on especially in the subways, and buses. So, I stay home during most of the

winter and feel like I have cabin fever. Would love to be snorkeling in the

Caribbean somewhere. Good luck to you, Ken. let us know how you make out. Take

care~~~~Dolores

Ken Pearson <maputo95@...> wrote:

Hi Dolores

Thank you very much. I am so glad that you went into remission after 18 months

on 100 mg 2x a day.

May I ask how long you have been in remission for and whether or not the higher

dosage had any increased side-effects.

It's so cold here in London, that I think myy joints are worse?!

Regards

Ken.

mike rosner <martysfolks2004@...> wrote:

Hi Ken, Gwen is right. Steroids and the poison cocktails that are feelgood meds

at first will eventually kill you because they are immune suppressants. When the

immune system is suppressed you become vulnerable to any bacteria that comes

along. Minocin is not only an antibiotic, but an antiinflammatory as well. I

went into remission after 18 months of being on Minocin 100mg twice a day every

day. The best to you. Dolores

Gwen <gmartin4@...> wrote: Hi Ken

When I first went to the Rheumy, she had me on 65mg Steroids, plus weekly

injections of methotrexate, both of which helped at the beginning,but the side

effects where sending me to an early grave.

So trust me, do not take any, of those drugs, as they are poison.

I gave them drugs up, when the Minocin kick in.

Minocin is the only thing that works for me.

And I am living proof this treatment works.

Thank god for this support group, which has given me back my life.

My GP, has put several of her other patience's, on this drug, who are also

having excellent results.

So the word, is slowly getting out, and the drug companies will be going broke.

Regards Gwen

rheumatic from North Coast

Hello Leonie,

Please allow me to introduce myself my name is and I live near Byron Bay

in the North Coast. Like yourself I have been trying natural remedies to treat

my RA. When diagnosed in Oct'05 my RF reading was considered high at 38 by my

doctor. With my refusal to take all the toxic meds that the Rheumy suggested I

take to myself and my doctor. My latest reading in Oct'07 was 515 as you can

imagine the pain and loss of mobility that I am currently experiencing.

I receive all latest e-mails from the group but for some reason cannot post

anything for myself.

Your e-mail has caught my eye for the following reasons. After 3 months of

continually calling Dr. Mouroukas. He finally rang and explained what his

approach was with this AP therapy. Like you I also am apprehensive of taking any

more drugs that I have too.

In speaking with the doctor he has informed me that the distance between the

North Coast and Sydney would prove to be difficult in doing this AP therapy.

What I would like to know if you do not mind if you do decide to do his

treatment could you advise how the you find the therapy with living in Canberra,

how sick you actually get.

I know you haven't started yet he sounded really nice and for myself I'm quite

interested in starting as I want to get better.

Thank you

e-mail

tuffys@...

January 5, 2008

Hi Dodo,now I really am going to crucify you!!!!!!! What I really wanted

to say is....do you still have that email I sent to you about how

minocin works? Maybe you can cut and paste it in for the interest of

folks here.I have it somewhere but can't find it and the posting at

Roadback where I got it from is archived and I could not find it there

either.Love you analogy of constipated micoplasma. hehehe Lynne G./SD

mike rosner wrote:

> Yes, I do. I went into the hospital for aches and pains so bad that I

> cried when I rolled over in bed. When I got to the hospital, they did

> a routine chest x-ray and said I had pneumonia and that they would

> have to admit me. I was very surprised because at that point, I had no

> symptoms of any thing wrong with my lungs. After a CT-scan on the

> third day, they entered the room to tell me that I did not have

> pneumonia. My relief was short-lived. They said I had Pulmonary

> Fibrosis, but they didn't know from what and discharged me. I spent

> the next 8 months bedridden with excruciating pain in all my joint and

> then my lungs started to give me trouble. I happened to be in Florida

> when I landed in the hospital in January of 2005 and didn't get back

> to my apt.in NY until June 2005. That was 6 months in bed. Then I was

> another 4 months running from specialist to specialist getting worse

> and worse. I went from the bed to the bathroom and back. That was my

> life ba! ck then. The

> diagnosis of Scleroderma, & R/A came in October of 2005, when I was

> told my lungs were so damaged that I only had months to live. I was

> terminal and all they could do was keep me

> comfortable. I went back to our vaction home in Florida alone and went

> back to bed. to die. While I was there, one day, I decided to check

> out some sites on the computer and found the S/D foundation. I posted

> my problems on there and a wonderful lady introduced me to A/P and

> told me to read the books by Scammell telling me about the " Infectious

> Theory " . She also told me about the Roadback foundation. I read the

> posts and asked Richie for the name of an A/P doc near NY. He told me

> about Dr. Trentham in Boston. I picked up the phone and made my

> appointment. This was now December. My husband is Santa Claus during

> the month of December and we had 65 people coming to a party in two

> weeks and I was skin and bones, sick as a dog, throwing up and

> diarrhea continuously, using a nebulizer every few hours to breathe,

> anemic, weak and my hands could not even turn a knob. I was afraid to

> lock the bathroom door because I knew I couldn't get out. I counted

> the days till! my

> appointment. My husband and I flew to Boston. I got my prescription of

> Minocin. Started immediately and it's been uphill since. Within two

> months, the Raynaud's left, the anema rectified itself, the pains went

> away, the hands started to work, Every month I noticed an improvement.

> To check out if this was really caused by micoplasma, I had myself

> tested for micoplasmas and lo and behold, I was positive for

> micoplasma pneumonae. I was just tested again recently and the blood

> test showed that I had the antibodies which mean that I had been

> infected at one time and may still have some floating around. My lungs

> are healing as is the fibrosis in my heart and my bladder fibrosis had

> to be surgically removed. I am in full remission and probably don't

> need to do the Marshall Protocol. But to be safe I want to attack each

> and every last bit of micoplasma I may have in my body. I will never

> again let them take me over like that. Never! I will stay on top of it

> till my

> dying day. My docs now are amazed at my comeback. I have been left

> with some lung damage which I am hoping will repair itself as I heal.

> My immune system is up and running again and I am my peppy ole self

> doing all the things that I love to do. No more living in bed. I still

> see my Rheumatologist in Boston once a year for a check up and my

> local Primary Care Physician takes care of my normal needs throughout

> the year. I am fortunate to have met that wonderful lady who rescued

> me. You know her as Lynne G. from Ontario Canada. We have become good

> friends and last summer 2006, I had the chance to visit her and her

> wonderful husband Santos. Two lovely people and gave them the biggest

> bear hug. I am so grateful. I have done lots of research and am

> presently writing a book. I hope this story answers your questions.

> Your swelling will go down. Minocin is an antiinflammatory as well as

> an antibiotic. Give it time and remove all the other

> antiinflammatories and

> steroidal medications, because all they do is cover up the pain, and

> dampen the immune system rendering it incapable of doing the job of

> weakening and killing off the micoplasma. They are like putting a

> bandaid on a cancer. Good luck to you. My New Year Mantra to all of

> you is Have a Happy, Healthy, Healing New Year ~~~~~My best~~~~Dolores

>

> Ken Pearson <maputo95@... <mailto:maputo95%40>> wrote:

> Hi Dolores

>

> Good to know of your improvement.

>

> I really hope the Marshall Protocol will kill off the last of the

> mycoplasma..

>

> I have increased my Minocin dosage to 100 mg, 2x a day and wonder how

> long it will take to kick in, any idea? In fact, I feel better on my

> 3rd day ot this regime, but that may be coincidental.

>

> The tendon attached to my thumb seems to have swelled up, restricting

> movement, any suggestions, Dolores?

>

> Have you any convincing argument that mycoplasma causes our various

> conditions? I'd love to hear it.

>

> Lovely to hear of your escape to the Carribean last winter as Dec/Jan

> seem to be the worst months for my RA. Southern California sounds very

> enticing, away from those cold, northern states. keep on the outdoor

> pursuits, Dolores.

>

> Please keep us informed of your progress, please, details, this is

> most heartening.

>

> Ken.

>

> mike rosner <martysfolks2004@...

> <mailto:martysfolks2004%40>> wrote:

> Hi Ken, You are very welcome. I started on Minocin 100mg twice a day

> in January 2005 and went into full remission in May 2007. Went to the

> doctor in June 2007 and they could find no sign of S/D, R/A, nor MCTD.

> My doctors were amazed. Since I had a lot of Minocin, I continued the

> medication until September 2007 and then went off for 6 weeks prior to

> starting the Marshall Protocol. When I started on the protocol, I was

> on the Benicar blockade only until October 15, 2007 then added the

> Minocin at 25mg every 48 hr. Last month I increased it to 50mg every

> 72 hr. I will increase it in about two weeks to 75mg. every 72 hr. and

> then up to 100mg. At that point, I will start Phase 2 of the Marshall

> Protocol. I am still symptom free. No doctor told me to go on the

> Marshall. It is of my own doing. I had to really scout around to find

> a doctor who would monitor me with the protocol. The reason I am doing

> this is because I believe that the Marshall Protocol will continue to

> kill off the micoplasmas until there are none left and I will be

> totally disease free in a couple of years. In 2005, I was bedridden

> for 8 months and near death. The same docs who are amazed gave me

> months to live. They can't believe I am still here and doing so well.

> I have absolutely no pain anywhere and do not take any pain

> medication. There was a time when just rolling over in bed was agony.

> I cried and cried because it hurt so much. I also had Raynaud's which

> disappeared during the third month after starting the Minocin. My

> recovery was uphill all the way. I just had the most fabulous New

> Year's. I partied, drank, and danced for 12 hours and had the best

> time of my life. I am old and retired but my zest for living is great.

>

> There is another lady in London that I e:mail with who has S/D. She is

> doing very well also.

>

> She said it was cold in London. We are feeling a cold spell in N.Y.

> too. I hate it and wish I was as far south as I can get. Last year, we

> went to Puerto Rico and St. Croix. It proved to be a very expensive

> vacation as we were there from December to May. I am still paying off

> that trip, so this year, we can't go anywhere. I am thinking of making

> a permanent move to

> Southern California, so I can be outdoors all the time. I love

> swimming, hiking, biking, and just being able to get around without

> wearing heavy coats, sweaters, boots, scarves, gloves, hats, etc: I

> feel so weighted down with so much clothing on especially in the

> subways, and buses. So, I stay home during most of the winter and feel

> like I have cabin fever. Would love to be snorkeling in the Caribbean

> somewhere. Good luck to you, Ken. let us know how you make out. Take

> care~~~~Dolores

>

> Ken Pearson <maputo95@... <mailto:maputo95%40>> wrote:

> Hi Dolores

>

> Thank you very much. I am so glad that you went into remission after

> 18 months on 100 mg 2x a day.

>

> May I ask how long you have been in remission for and whether or not

> the higher dosage had any increased side-effects.

>

> It's so cold here in London, that I think myy joints are worse?!

>

> Regards

>

> Ken.

>

> mike rosner <martysfolks2004@...

> <mailto:martysfolks2004%40>> wrote:

> Hi Ken, Gwen is right. Steroids and the poison cocktails that are

> feelgood meds at first will eventually kill you because they are

> immune suppressants. When the immune system is suppressed you become

> vulnerable to any bacteria that comes along. Minocin is not only an

> antibiotic, but an antiinflammatory as well. I went into remission

> after 18 months of being on Minocin 100mg twice a day every day. The

> best to you. Dolores

>

> Gwen <gmartin4@... <mailto:gmartin4%40bigpond.com>>

> wrote: Hi Ken

> When I first went to the Rheumy, she had me on 65mg Steroids, plus

> weekly injections of methotrexate, both of which helped at the

> beginning,but the side effects where sending me to an early grave.

> So trust me, do not take any, of those drugs, as they are poison.

> I gave them drugs up, when the Minocin kick in.

> Minocin is the only thing that works for me.

> And I am living proof this treatment works.

> Thank god for this support group, which has given me back my life.

> My GP, has put several of her other patience's, on this drug, who are

> also having excellent results.

> So the word, is slowly getting out, and the drug companies will be

> going broke.

>

> Regards Gwen

> rheumatic from North Coast

>

> Hello Leonie,

> Please allow me to introduce myself my name is and I live near

> Byron Bay in the North Coast. Like yourself I have been trying natural

> remedies to treat my RA. When diagnosed in Oct'05 my RF reading was

> considered high at 38 by my doctor. With my refusal to take all the

> toxic meds that the Rheumy suggested I take to myself and my doctor.

> My latest reading in Oct'07 was 515 as you can imagine the pain and

> loss of mobility that I am currently experiencing.

>

> I receive all latest e-mails from the group but for some reason cannot

> post anything for myself.

>

> Your e-mail has caught my eye for the following reasons. After 3

> months of continually calling Dr. Mouroukas. He finally rang and

> explained what his approach was with this AP therapy. Like you I also

> am apprehensive of taking any more drugs that I have too.

>

> In speaking with the doctor he has informed me that the distance

> between the North Coast and Sydney would prove to be difficult in

> doing this AP therapy.

>

> What I would like to know if you do not mind if you do decide to do

> his treatment could you advise how the you find the therapy with

> living in Canberra, how sick you actually get.

>

> I know you haven't started yet he sounded really nice and for myself

> I'm quite interested in starting as I want to get better.

>

> Thank you

>

> e-mail

> tuffys@... <mailto:tuffys%40linknet.com.au>

>

January 5, 2008

Hi Lynne, Don't know how to cut and paste, but I rewrote the new analogy of

constipated micoplasmas. You'll love the new version! Hehe!~~~~Dolores

lynneandsantos <lynneandsantos@...> wrote: