AP hasn't worked for me, Long story

[Guest guest]

I have been on AP for a full year and I feel zero changes. I realize it takes

time, but ...shouldn't I have *some* improvement at least? I can't imagine that

at the 2 year mark I would just wake up so much better. It seems logical to me

it would be gradual...if at all.

 

I feel like AP really only helps RA and Scleroderma. It seems the Sjogrens cases

like mine, Lupus and other rheumatic auto immune illnesses don't respond so well

to AP. Even doctors who use AP give no hope for Sjogrens specifically, including

the big names listed here. I have either seen or talked with various such

doctors. Whitman even tried to steer me towards Plaquenil and seemed doubtful of

Doxy or Mino but put it on the table, just because I asked so much.

 

There is a tiny handful of people with Sjogrens who claim they are better. Now

it is not my job to doubt patients that have suffered. But I cannot ignore the

facts. There aren't many SS patients on here or stories posted on the other

board, but here is the breakdown. A few NO change. A few claim they are

improved, but then you ask the Q's, and they aren't really that much better. One

such person takes Evoxac and says that now makes her close to normal as far as

saliva, whereas before didn't do anything. It didn''t do anything for me

either but even if it did post AP like it does for her, I can't take that junk

again with its ridiculous side effects. Another girl said her eyes are better,

but her eyes weren't bad enough for her to get plugs like me. And she doesn't

wear contacts and that's the true test as your eyes have to be completely

healthy to be able to withstand the added moisture loss from contact lens wear.

 

To add to the problem, I not only dealing with Sjogrens but constant nausea,

light headedness, dizziness and peripheral neuropathy. My eyes are still dry and

painful, no way can I stick my contacts back in, my vision is frequently so

blurry, my mouth is still a nasty cotton mouth and i wake to drink all night, my

throat is still dry and hard to talk, nose still dry and hard to breath,

feminine dryness, arm pits no longer sweat but that is more related to the

neuropathy I assume. Stomach still bloated all the time, I am little and eat

little but can't get back to my normal weight no matter what, despite a

relatively normal thyroid (and yes I have had much more than TSH done tons of

times). My face and body is full of pimples like I never before had, worse than

teenage acne some get. I have to take stuff to be able to go to the bathroom my

system is so sluggish. The neuropathy feels like my hands, feet, legs are

constantly being electrocuted. Other times

my legs feel like heavy tree trunks and sometimes my hands are so numb I drop

things. All this stuff combined and I cannot sleep as I am too busy putting in

eye drops, drinking water all night long, putting in saline wash inside the nose

so I can breath just a little, waking up in neuropathy pain. Body tired from

fighting the pain, tired from not sleeping. How can AP not help with a single

symptom?

 

I have done the cleanses, all natural raw food diets, gluten free, diet,

LDN, taken TONS of recommended supplements, taken the Doxy, everything. No

relief. I hate living like this and the ONLY thing that gave me hope was AP. Yet

I am completely and totally disappointed like I never imagined. There is nothing

worse in life than losing your health. Losing your job, being left by a

significant other, and all sorts of other troubles are nothing. There's a way

out with most other negative experiences. I have been through so much in life

and this takes the cake.

 

I just wanted to say that while AP can do miracles for some, and yet does

nothing for others, even damage is possible, it's not completely without risks.

I'd love to think there is still hope, but honestly I don't know where I would

derive it from. I wish AP worked for me, I even added Zithromax to no avail. I

don't know if there is a point in continuing to take it along with all the

supplements.

 

I'd appreciate if a certain someone doesn't reply to this. She's caused me

nothing but heartache. While I have her on my spam filter and never see her

group emails anymore, if she replies, then anyone who replies after her, because

her name is in the body of the mail from before, those too will go in the junk

folder so I will miss it all. She knows who she is. Everyone else here has been

so kind and supportive. I appreciate that much more than needless criticism.

There's enough to be depressed about as it is.

 

Thanks.

 

 

 

[Guest guest]

Vicki - so sorry to read that you haven' found anything to help. I do

not have ideas about your disease per se, but a couple of things you

said made me want to offer some narrow comments:

1) Acne is well-known to be associated with high testosterone. I wonder

if you have visited a hormone specialist to see if this is relevant.

Mainstream doctors or endocrinologists do not test sex hormones & are

not educated with sex hormones. Here's a reference:

http://www.internethealthlibrary.com/Health-problems/Acne.htm

Acne is a response in the skin to the hormone testosterone. In most

people the testosterone is present in normal levels in the blood, but

the skin reacts in an abnormal way to it. [snip] Although the

abnormality in the skin is caused by the effect of the hormone

testosterone, the levels of this hormone in patients with acne is

generally normal.

[snip] In women, its main effects are counteracted by the female

hormones.

One interesting thing about hormones, is that they are doing studies

about them for pain & fibro. in this group says his wife has

been helped tremendously from supplementing estrogen.

2) The TSH measures a pituitary hormone. The TSH is not a thyroid

hormone. It is a lousy test because it does not alway tell how your

thyroid is doing. I am a primo example of this. My TSH was normal

Normal NORMAL. However, I learned (eventually) that I did not have any

thyroid hormones.

The TSH is supposed to tell how your thyroid is doing, but if your TSH

mechanism doesn't work, then the TSH test is worthless. You should

measure your free thyroid hormones. Those are ft3 & ft4. It has to be

'free', because those are the hormones are unbound to other proteins.

Only the 'free' hormones are the active hormones. It doesn't do any

good to test total t, or total t4, because this will not tell you how

much is free. Also, ft3 is the main thing. If you can get only one

test, it should be ft3.

I do not mean to suggest that you have a thyroid problem. It's just

that I'm not the only one who's TSH does not reflect what the thyroid is

doing. The TSH test works if you are fairly healthy & works for normal

people. There's a lot of people out there like me. Mainstream doctors

rarely test ft3, whereas alternative or holistic doctors will *always*

test ft3.

And I just want to say that when my ft4 & ft3 were low, I had the most

pain everywhere. Big HUGE difference when I got that fixed. And this

brings an interesting perspective to hormones, because if one is helped

by estrogen, and another is helped by testosterone (usually men), and

some are helped by thyroid, then I don't see why hormone testing should

be excluded from trying to pinpoint health problems.

Amy

Vicki wrote:

>

>

>

> I have been on AP for a full year and I feel zero changes. I realize

> it takes time, but ...shouldn't I have *some* improvement at least? I

> can't imagine that at the 2 year mark I would just wake up so much

> better. It seems logical to me it would be gradual...if at all.

>

> I feel like AP really only helps RA and Scleroderma. It seems the

> Sjogrens cases like mine, Lupus and other rheumatic auto immune

> illnesses don't respond so well to AP. Even doctors who use AP give no

> hope for Sjogrens specifically, including the big names listed here. I

> have either seen or talked with various such doctors. Whitman even

> tried to steer me towards Plaquenil and seemed doubtful of Doxy or

> Mino but put it on the table, just because I asked so much.

>

> There is a tiny handful of people with Sjogrens who claim they are

> better. Now it is not my job to doubt patients that have suffered. But

> I cannot ignore the facts. There aren't many SS patients on here or

> stories posted on the other board, but here is the breakdown. A few NO

> change. A few claim they are improved, but then you ask the Q's, and

> they aren't really that much better. One such person takes Evoxac and

> says that now makes her close to normal as far as saliva, whereas

> before didn't do anything. It didn''t do anything for me either but

> even if it did post AP like it does for her, I can't take that junk

> again with its ridiculous side effects. Another girl said her eyes are

> better, but her eyes weren't bad enough for her to get plugs like me.

> And she doesn't wear contacts and that's the true test as your eyes

> have to be completely healthy to be able to withstand the added

> moisture loss from contact lens wear.

>

> To add to the problem, I not only dealing with Sjogrens but constant

> nausea, light headedness, dizziness and peripheral neuropathy. My eyes

> are still dry and painful, no way can I stick my contacts back in, my

> vision is frequently so blurry, my mouth is still a nasty cotton mouth

> and i wake to drink all night, my throat is still dry and hard to

> talk, nose still dry and hard to breath, feminine dryness, arm pits no

> longer sweat but that is more related to the neuropathy I assume.

> Stomach still bloated all the time, I am little and eat little but

> can't get back to my normal weight no matter what, despite a

> relatively normal thyroid (and yes I have had much more than TSH done

> tons of times). My face and body is full of pimples like I never

> before had, worse than teenage acne some get. I have to take stuff to

> be able to go to the bathroom my system is so sluggish. The neuropathy

> feels like my hands, feet, legs are constantly being electrocuted.

> Other times

> my legs feel like heavy tree trunks and sometimes my hands are so numb

> I drop things. All this stuff combined and I cannot sleep as I am too

> busy putting in eye drops, drinking water all night long, putting in

> saline wash inside the nose so I can breath just a little, waking up

> in neuropathy pain. Body tired from fighting the pain, tired from not

> sleeping. How can AP not help with a single symptom?

>

> I have done the cleanses, all natural raw food diets, gluten free,

> diet, LDN, taken TONS of recommended supplements, taken the Doxy,

> everything. No relief. I hate living like this and the ONLY thing that

> gave me hope was AP. Yet I am completely and totally disappointed like

> I never imagined. There is nothing worse in life than losing your

> health. Losing your job, being left by a significant other, and all

> sorts of other troubles are nothing. There's a way out with

> most other negative experiences. I have been through so much in life

> and this takes the cake.

>

> I just wanted to say that while AP can do miracles for some, and yet

> does nothing for others, even damage is possible, it's not completely

> without risks. I'd love to think there is still hope, but honestly I

> don't know where I would derive it from. I wish AP worked for me, I

> even added Zithromax to no avail. I don't know if there is a point in

> continuing to take it along with all the supplements.

>

> I'd appreciate if a certain someone doesn't reply to this. She's

> caused me nothing but heartache. While I have her on my spam

> filter and never see her group emails anymore, if she replies, then

> anyone who replies after her, because her name is in the body of the

> mail from before, those too will go in the junk folder so I will miss

> it all. She knows who she is. Everyone else here has been so kind and

> supportive. I appreciate that much more than needless criticism.

> There's enough to be depressed about as it is.

>

> Thanks.

>

>

>

>

>

[Guest guest]

I am so sorry Vicki, I can certainly relate to all your pain and not sleeping

issues. AP worked some for me but at the 1 1/2 year mark, and while I was

grateful for the improvement (however small) all I was able to do was muster

thru the day. I had to re-think things as I am/was missing precious time with my

boys 10 and 12, so after much thought and weighing the situation I had to go on

traditional meds, while I know the side effects are awful I had to decide how

much more time with my boys, at these fun ages, was I willing to miss and the

answer was if I could feel " normal " ...well consequences be damned. Anyway I am

feeling much, much better and feel like I am living again. With pain

improvement I am sleeping again too so that was just another good benefit.

Everything has its risks and I am not advocating one or the other I am just

saying sometimes you have to re-evaluate things and make adjustments that you

feel would be best for you. I still take my mino too and and hoping with my

inflammation finally under control that it may work also. Praying for

guidance.

Sue

rheumatic AP hasn't worked for me, Long story

I have been on AP for a full year and I feel zero changes. I realize it takes

time, but ...shouldn't I have *some* improvement at least? I can't imagine that

at the 2 year mark I would just wake up so much better. It seems logical to me

it would be gradual...if at all.

I feel like AP really only helps RA and Scleroderma. It seems the Sjogrens

cases like mine, Lupus and other rheumatic auto immune illnesses don't respond

so well to AP. Even doctors who use AP give no hope for Sjogrens specifically,

including the big names listed here. I have either seen or talked with various

such doctors. Whitman even tried to steer me towards Plaquenil and seemed

doubtful of Doxy or Mino but put it on the table, just because I asked so much.

There is a tiny handful of people with Sjogrens who claim they are better. Now

it is not my job to doubt patients that have suffered. But I cannot ignore the

facts. There aren't many SS patients on here or stories posted on the other

board, but here is the breakdown. A few NO change. A few claim they are

improved, but then you ask the Q's, and they aren't really that much better. One

such person takes Evoxac and says that now makes her close to normal as far as

saliva, whereas before didn't do anything. It didn''t do anything for me either

but even if it did post AP like it does for her, I can't take that junk again

with its ridiculous side effects. Another girl said her eyes are better, but her

eyes weren't bad enough for her to get plugs like me. And she doesn't wear

contacts and that's the true test as your eyes have to be completely healthy to

be able to withstand the added moisture loss from contact lens wear.

To add to the problem, I not only dealing with Sjogrens but constant nausea,

light headedness, dizziness and peripheral neuropathy. My eyes are still dry and

painful, no way can I stick my contacts back in, my vision is frequently so

blurry, my mouth is still a nasty cotton mouth and i wake to drink all night, my

throat is still dry and hard to talk, nose still dry and hard to breath,

feminine dryness, arm pits no longer sweat but that is more related to the

neuropathy I assume. Stomach still bloated all the time, I am little and eat

little but can't get back to my normal weight no matter what, despite a

relatively normal thyroid (and yes I have had much more than TSH done tons of

times). My face and body is full of pimples like I never before had, worse than

teenage acne some get. I have to take stuff to be able to go to the bathroom my

system is so sluggish. The neuropathy feels like my hands, feet, legs are

constantly being electrocuted. Other times

my legs feel like heavy tree trunks and sometimes my hands are so numb I drop

things. All this stuff combined and I cannot sleep as I am too busy putting in

eye drops, drinking water all night long, putting in saline wash inside the nose

so I can breath just a little, waking up in neuropathy pain. Body tired from

fighting the pain, tired from not sleeping. How can AP not help with a single

symptom?

I have done the cleanses, all natural raw food diets, gluten free, diet, LDN,

taken TONS of recommended supplements, taken the Doxy, everything. No relief. I

hate living like this and the ONLY thing that gave me hope was AP. Yet I am

completely and totally disappointed like I never imagined. There is nothing

worse in life than losing your health. Losing your job, being left by a

significant other, and all sorts of other troubles are nothing. There's a way

out with most other negative experiences. I have been through so much in life

and this takes the cake.

I just wanted to say that while AP can do miracles for some, and yet does

nothing for others, even damage is possible, it's not completely without risks.

I'd love to think there is still hope, but honestly I don't know where I would

derive it from. I wish AP worked for me, I even added Zithromax to no avail. I

don't know if there is a point in continuing to take it along with all the

supplements.

I'd appreciate if a certain someone doesn't reply to this. She's caused me

nothing but heartache. While I have her on my spam filter and never see her

group emails anymore, if she replies, then anyone who replies after her, because

her name is in the body of the mail from before, those too will go in the junk

folder so I will miss it all. She knows who she is. Everyone else here has been

so kind and supportive. I appreciate that much more than needless criticism.

There's enough to be depressed about as it is.

Thanks.

[Guest guest]

HI Vicki, just read your post. Had a few questions, if you don't mind....no

worries...ok, first...are you on the pelleted minocin? Is your AP physician one

of the ones known on this list? How are you taking the minocin? Did you start

slow....work up to twice a day...etc....

I have what my DRs call UCTD...I tested + for SD and for RA but my RNP antibody

is neg....so technically I do not have Mixed Connective Tissue Disease...Either

I have RA and SD or I have what is called undifferentiated CTD...

Either way...hey...I am still ill...The minocin worked for me within the first

couple months...I guess I am wondering if you have had the Mycoplasma labs...to

indicate...what if any type of infection....some abx work better than

mino...depending on what type of mycobacteria you have....just some thoughts...

I have been off the minocin for about 3 years...DRs took me kicking and

screaming off of it due to an allergic reaction.....hypersensitivity

pneumonitis..caused a lung condition...they think...I guess my really big

question would be is, is your physician one of the experienced AP DRs?

Trying to help...and my apologies if you have answered all these questions

before...I am not on here that often so do miss a lot...

Long time rheumy BB member, Debbie

rheumatic AP hasn't worked for me, Long story

I have been on AP for a full year and I feel zero changes. I realize it takes

time, but ...shouldn't I have *some* improvement at least? I can't imagine that

at the 2 year mark I would just wake up so much better. It seems logical to me

it would be gradual...if at all.

I feel like AP really only helps RA and Scleroderma. It seems the Sjogrens

cases like mine, Lupus and other rheumatic auto immune illnesses don't respond

so well to AP. Even doctors who use AP give no hope for Sjogrens specifically,

including the big names listed here. I have either seen or talked with various

such doctors. Whitman even tried to steer me towards Plaquenil and seemed

doubtful of Doxy or Mino but put it on the table, just because I asked so much.

There is a tiny handful of people with Sjogrens who claim they are better. Now

it is not my job to doubt patients that have suffered. But I cannot ignore the

facts. There aren't many SS patients on here or stories posted on the other

board, but here is the breakdown. A few NO change. A few claim they are

improved, but then you ask the Q's, and they aren't really that much better. One

such person takes Evoxac and says that now makes her close to normal as far as

saliva, whereas before didn't do anything. It didn''t do anything for me either

but even if it did post AP like it does for her, I can't take that junk again

with its ridiculous side effects. Another girl said her eyes are better, but her

eyes weren't bad enough for her to get plugs like me. And she doesn't wear

contacts and that's the true test as your eyes have to be completely healthy to

be able to withstand the added moisture loss from contact lens wear.

To add to the problem, I not only dealing with Sjogrens but constant nausea,

light headedness, dizziness and peripheral neuropathy. My eyes are still dry and

painful, no way can I stick my contacts back in, my vision is frequently so

blurry, my mouth is still a nasty cotton mouth and i wake to drink all night, my

throat is still dry and hard to talk, nose still dry and hard to breath,

feminine dryness, arm pits no longer sweat but that is more related to the

neuropathy I assume. Stomach still bloated all the time, I am little and eat

little but can't get back to my normal weight no matter what, despite a

relatively normal thyroid (and yes I have had much more than TSH done tons of

times). My face and body is full of pimples like I never before had, worse than

teenage acne some get. I have to take stuff to be able to go to the bathroom my

system is so sluggish. The neuropathy feels like my hands, feet, legs are

constantly being electrocuted. Other times

my legs feel like heavy tree trunks and sometimes my hands are so numb I drop

things. All this stuff combined and I cannot sleep as I am too busy putting in

eye drops, drinking water all night long, putting in saline wash inside the nose

so I can breath just a little, waking up in neuropathy pain. Body tired from

fighting the pain, tired from not sleeping. How can AP not help with a single

symptom?

I have done the cleanses, all natural raw food diets, gluten free, diet, LDN,

taken TONS of recommended supplements, taken the Doxy, everything. No relief. I

hate living like this and the ONLY thing that gave me hope was AP. Yet I am

completely and totally disappointed like I never imagined. There is nothing

worse in life than losing your health. Losing your job, being left by a

significant other, and all sorts of other troubles are nothing. There's a way

out with most other negative experiences. I have been through so much in life

and this takes the cake.

I just wanted to say that while AP can do miracles for some, and yet does

nothing for others, even damage is possible, it's not completely without risks.

I'd love to think there is still hope, but honestly I don't know where I would

derive it from. I wish AP worked for me, I even added Zithromax to no avail. I

don't know if there is a point in continuing to take it along with all the

supplements.

I'd appreciate if a certain someone doesn't reply to this. She's caused me

nothing but heartache. While I have her on my spam filter and never see her

group emails anymore, if she replies, then anyone who replies after her, because

her name is in the body of the mail from before, those too will go in the junk

folder so I will miss it all. She knows who she is. Everyone else here has been

so kind and supportive. I appreciate that much more than needless criticism.

There's enough to be depressed about as it is.

Thanks.

[Guest guest]

Hi Vicki, I'm sorry you are not feeling well and are so discouraged.

I just reread parts of Overcoming Arthritis by Brownstein and also parts of the

Infection

Connection by Poehlmann. Although I'm new to arthritis and AP, it seems to me

that

sometimes a lot of things have to come together for a patient in order to get

things

moving in the right direction, and it is so individual.

For someone it might be getting hormones balanced. Or doing a round of IVs. Or

injections. Or adding a different antibiotic to address infections like strep,

or taking

antivirals to knock back herpes.

Have you ever been tested for mycoplasma antibodies? Are there any lab results

where

you can see improvement over time? I've read that sometimes labs improve before

symptoms, and sometimes it's the other way around.

I wish I could help,

[Guest guest]

Debbie i always felt so bad for you that you couldnt take mino or doxy,

especially since you saw relief with them. Is there any substitute you could

take without allergic reaction? Do the docs know exactly what you are allergic

to in the med? Is there something you can take the medicine with that will

counteract this serious side effect? There also some natural anti bacterials but

they arent as strong i hear. I took them a while, they are raintree brand. Didnt

help me but i only took a few months. I figured I needed the stronger doxy

despite the risk of more side effects.

As far as me, no i never did find a good abx doc depsite the time

and travel. Even docs known for rx'ing antibiotics would try to get me to do

different things. I never undestood. Ie Plaquenil, infrared saunas, tried to

sell me their expensive supplements, methylation therapy, everything but what i

went there for. They have all been disappointing.

 

From: DEBBIE GIBSON <Debbullwinkle@...>

Subject: Re: rheumatic AP hasn't worked for me, Long story

rheumatic

Date: Wednesday, August 13, 2008, 7:56 AM

HI Vicki, just read your post. Had a few questions, if you don't mind....no

worries...ok, first...are you on the pelleted minocin? Is your AP physician one

of the ones known on this list? How are you taking the minocin? Did you start

slow....work up to twice a day...etc... .

I have what my DRs call UCTD...I tested + for SD and for RA but my RNP antibody

is neg....so technically I do not have Mixed Connective Tissue Disease...Either

I have RA and SD or I have what is called undifferentiated CTD...

Either way...hey... I am still ill...The minocin worked for me within the first

couple months...I guess I am wondering if you have had the Mycoplasma labs...to

indicate...what if any type of infection... .some abx work better than

mino...depending on what type of mycobacteria you have....just some thoughts...

I have been off the minocin for about 3 years...DRs took me kicking and

screaming off of it due to an allergic reaction.... .hypersensitivit y

pneumonitis. .caused a lung condition... they think...I guess my really big

question would be is, is your physician one of the experienced AP DRs?

Trying to help...and my apologies if you have answered all these questions

before...I am not on here that often so do miss a lot...

Long time rheumy BB member, Debbie

rheumatic AP hasn't worked for me, Long story

I have been on AP for a full year and I feel zero changes. I realize it takes

time, but ...shouldn't I have *some* improvement at least? I can't imagine that

at the 2 year mark I would just wake up so much better. It seems logical to me

it would be gradual...if at all.

I feel like AP really only helps RA and Scleroderma. It seems the Sjogrens cases

like mine, Lupus and other rheumatic auto immune illnesses don't respond so well

to AP. Even doctors who use AP give no hope for Sjogrens specifically, including

the big names listed here. I have either seen or talked with various such

doctors. Whitman even tried to steer me towards Plaquenil and seemed doubtful of

Doxy or Mino but put it on the table, just because I asked so much.

There is a tiny handful of people with Sjogrens who claim they are better. Now

it is not my job to doubt patients that have suffered. But I cannot ignore the

facts. There aren't many SS patients on here or stories posted on the other

board, but here is the breakdown. A few NO change. A few claim they are

improved, but then you ask the Q's, and they aren't really that much better. One

such person takes Evoxac and says that now makes her close to normal as far as

saliva, whereas before didn't do anything. It didn''t do anything for me either

but even if it did post AP like it does for her, I can't take that junk again

with its ridiculous side effects. Another girl said her eyes are better, but her

eyes weren't bad enough for her to get plugs like me. And she doesn't wear

contacts and that's the true test as your eyes have to be completely healthy to

be able to withstand the added moisture loss from contact lens wear.

To add to the problem, I not only dealing with Sjogrens but constant nausea,

light headedness, dizziness and peripheral neuropathy. My eyes are still dry and

painful, no way can I stick my contacts back in, my vision is frequently so

blurry, my mouth is still a nasty cotton mouth and i wake to drink all night, my

throat is still dry and hard to talk, nose still dry and hard to breath,

feminine dryness, arm pits no longer sweat but that is more related to the

neuropathy I assume. Stomach still bloated all the time, I am little and eat

little but can't get back to my normal weight no matter what, despite a

relatively normal thyroid (and yes I have had much more than TSH done tons of

times). My face and body is full of pimples like I never before had, worse than

teenage acne some get. I have to take stuff to be able to go to the bathroom my

system is so sluggish. The neuropathy feels like my hands, feet, legs are

constantly being electrocuted. Other times

my legs feel like heavy tree trunks and sometimes my hands are so numb I drop

things. All this stuff combined and I cannot sleep as I am too busy putting in

eye drops, drinking water all night long, putting in saline wash inside the nose

so I can breath just a little, waking up in neuropathy pain. Body tired from

fighting the pain, tired from not sleeping. How can AP not help with a single

symptom?

I have done the cleanses, all natural raw food diets, gluten free, diet, LDN,

taken TONS of recommended supplements, taken the Doxy, everything. No relief. I

hate living like this and the ONLY thing that gave me hope was AP. Yet I am

completely and totally disappointed like I never imagined. There is nothing

worse in life than losing your health. Losing your job, being left by a

significant other, and all sorts of other troubles are nothing. There's a way

out with most other negative experiences. I have been through so much in life

and this takes the cake.

I just wanted to say that while AP can do miracles for some, and yet does

nothing for others, even damage is possible, it's not completely without risks.

I'd love to think there is still hope, but honestly I don't know where I would

derive it from. I wish AP worked for me, I even added Zithromax to no avail. I

don't know if there is a point in continuing to take it along with all the

supplements.

I'd appreciate if a certain someone doesn't reply to this. She's caused me

nothing but heartache. While I have her on my spam filter and never see her

group emails anymore, if she replies, then anyone who replies after her, because

her name is in the body of the mail from before, those too will go in the junk

folder so I will miss it all. She knows who she is. Everyone else here has been

so kind and supportive. I appreciate that much more than needless criticism.

There's enough to be depressed about as it is.

Thanks.

[Guest guest]

thanks sue and amy. Sue you give me some hope that you didnt get relief till 1.5

years and i am at one year. not that we are all the same, but it's something at

least.

 

amy i saw a gyno and endo for the hormones as well as naturopath. None were able

to find problems with my hormones. I also had all the thyroid tests. Even

antibodies for thyroid as well as t3, t4, free t3, free t4 and tsh. As far as

sex hormones I had those tested but that was a year before i got ill.

>

>

>

> I have been on AP for a full year and I feel zero changes. I realize

> it takes time, but ...shouldn't I have *some* improvement at least? I

> can't imagine that at the 2 year mark I would just wake up so much

> better. It seems logical to me it would be gradual...if at all.

>

> I feel like AP really only helps RA and Scleroderma. It seems the

> Sjogrens cases like mine, Lupus and other rheumatic auto immune

> illnesses don't respond so well to AP. Even doctors who use AP give no

> hope for Sjogrens specifically, including the big names listed here. I

> have either seen or talked with various such doctors. Whitman even

> tried to steer me towards Plaquenil and seemed doubtful of Doxy or

> Mino but put it on the table, just because I asked so much.

>

> There is a tiny handful of people with Sjogrens who claim they are

> better. Now it is not my job to doubt patients that have suffered. But

> I cannot ignore the facts. There aren't many SS patients on here or

> stories posted on the other board, but here is the breakdown. A few NO

> change. A few claim they are improved, but then you ask the Q's, and

> they aren't really that much better. One such person takes Evoxac and

> says that now makes her close to normal as far as saliva, whereas

> before didn't do anything. It didn''t do anything for me either but

> even if it did post AP like it does for her, I can't take that junk

> again with its ridiculous side effects. Another girl said her eyes are

> better, but her eyes weren't bad enough for her to get plugs like me.

> And she doesn't wear contacts and that's the true test as your eyes

> have to be completely healthy to be able to withstand the added

> moisture loss from contact lens wear.

>

> To add to the problem, I not only dealing with Sjogrens but constant

> nausea, light headedness, dizziness and peripheral neuropathy. My eyes

> are still dry and painful, no way can I stick my contacts back in, my

> vision is frequently so blurry, my mouth is still a nasty cotton mouth

> and i wake to drink all night, my throat is still dry and hard to

> talk, nose still dry and hard to breath, feminine dryness, arm pits no

> longer sweat but that is more related to the neuropathy I assume.

> Stomach still bloated all the time, I am little and eat little but

> can't get back to my normal weight no matter what, despite a

> relatively normal thyroid (and yes I have had much more than TSH done

> tons of times). My face and body is full of pimples like I never

> before had, worse than teenage acne some get. I have to take stuff to

> be able to go to the bathroom my system is so sluggish. The neuropathy

> feels like my hands, feet, legs are constantly being electrocuted.

> Other times

> my legs feel like heavy tree trunks and sometimes my hands are so numb

> I drop things. All this stuff combined and I cannot sleep as I am too

> busy putting in eye drops, drinking water all night long, putting in

> saline wash inside the nose so I can breath just a little, waking up

> in neuropathy pain. Body tired from fighting the pain, tired from not

> sleeping. How can AP not help with a single symptom?

>

> I have done the cleanses, all natural raw food diets, gluten free,

> diet, LDN, taken TONS of recommended supplements, taken the Doxy,

> everything. No relief. I hate living like this and the ONLY thing that

> gave me hope was AP. Yet I am completely and totally disappointed like

> I never imagined. There is nothing worse in life than losing your

> health. Losing your job, being left by a significant other, and all

> sorts of other troubles are nothing. There's a way out with

> most other negative experiences. I have been through so much in life

> and this takes the cake.

>

> I just wanted to say that while AP can do miracles for some, and yet

> does nothing for others, even damage is possible, it's not completely

> without risks. I'd love to think there is still hope, but honestly I

> don't know where I would derive it from. I wish AP worked for me, I

> even added Zithromax to no avail. I don't know if there is a point in

> continuing to take it along with all the supplements.

>

> I'd appreciate if a certain someone doesn't reply to this. She's

> caused me nothing but heartache. While I have her on my spam

> filter and never see her group emails anymore, if she replies, then

> anyone who replies after her, because her name is in the body of the

> mail from before, those too will go in the junk folder so I will miss

> it all. She knows who she is. Everyone else here has been so kind and

> supportive. I appreciate that much more than needless criticism.

> There's enough to be depressed about as it is.

>

> Thanks.

>

>

>

>

>

[Guest guest]

Vicki, what about strep? Were you tested for strep? It's a cheap test,

available from

TARCI.

It wouldn't respond to tetracyclines, it would need something in the penicillin

family.

An untreated concurrent strep infection is something that can definitely hold up

progress,

well, so I've read.

Also, someone told me herpes can hold up progress too. If your MD would be

willing to

call Dr. Coker-Vann at TARCI, she might be able to help.

I'm not exactly sure what to do for herpes. My husband gets cold sores, and we

are about

to read a book called " Wipe Out Herpes with BHT " available at www.ceri.com He

currently

takes Niacinamide to suppress the virus.

Brownstein says thyroid, adrenals and sex hormones need to be optimal too. It's

also very

difficult to find a competent practitioner in that area as well. My husband and

I have used

Mark for in-home tests and consultations. www.drmarkrhodes.com

Keep overturning rocks, Vicki! You'll get there!

[Guest guest]

>

> michelle i dont now if i teste for strep i dont recall that but i wouldnt need

to have

symptoms now to have it? as far as the herpes i dont have a single sign, not

cold soar

either. i forgot about niacin being anti viral, i can start that i meant to a

while back. But

your husband takes nicimacide? how much? I had read niacin can be drying thats

why i

didnt take it. Since i am already so dried out all over and its so bad.

Right, strep can be a stealth infection too. I can't remember where I read

about it....one of

the arthritis books. Was is Scammell? Ganger & Lange? Maybe a FAQ somewhere.

Anyways, I was tested for strep as part of the tests available via TARCI. I

wanted to rule it

out because mycoplasma and chlamydia would both take tetracyclines, but strep

would

require a penicillin.

Yes, my husband takes 500 mg niacinamide (not niacin) per day.

[Guest guest]

debbie, forgot to answer that i began with 3x weekly doxy then daily. now back

to every other dya. i dont know what i am doing frankly. I was gonna do 2X a day

but then someone mentioned that my feeling worse could mean that its die off and

i should reduce. i dont know if i need IV i dont know who to ask or get it from.

I stopped the zithromax but dotn know if i should. now just doxy, 100mg. i

always worry not knowing if probitics are enough after i take antibiotics no one

tells you how much to take of them, what potency what strains. i take a good one

but who knows if it enough and if i should take more of it. And since i am

always bloated i just dont know. cannot digest food well and dont go to the

restroom as often and much as i should.  but that happened before the abx,

although i wonder if it makes it worse.

From: DEBBIE GIBSON <Debbullwinkle@...>

Subject: Re: rheumatic AP hasn't worked for me, Long story

rheumatic

Date: Wednesday, August 13, 2008, 7:56 AM

HI Vicki, just read your post. Had a few questions, if you don't mind....no

worries...ok, first...are you on the pelleted minocin? Is your AP physician one

of the ones known on this list? How are you taking the minocin? Did you start

slow....work up to twice a day...etc... .

I have what my DRs call UCTD...I tested + for SD and for RA but my RNP antibody

is neg....so technically I do not have Mixed Connective Tissue Disease...Either

I have RA and SD or I have what is called undifferentiated CTD...

Either way...hey... I am still ill...The minocin worked for me within the first

couple months...I guess I am wondering if you have had the Mycoplasma labs...to

indicate...what if any type of infection... .some abx work better than

mino...depending on what type of mycobacteria you have....just some thoughts...

I have been off the minocin for about 3 years...DRs took me kicking and

screaming off of it due to an allergic reaction.... .hypersensitivit y

pneumonitis. .caused a lung condition... they think...I guess my really big

question would be is, is your physician one of the experienced AP DRs?

Trying to help...and my apologies if you have answered all these questions

before...I am not on here that often so do miss a lot...

Long time rheumy BB member, Debbie

rheumatic AP hasn't worked for me, Long story

I have been on AP for a full year and I feel zero changes. I realize it takes

time, but ...shouldn't I have *some* improvement at least? I can't imagine that

at the 2 year mark I would just wake up so much better. It seems logical to me

it would be gradual...if at all.

I feel like AP really only helps RA and Scleroderma. It seems the Sjogrens cases

like mine, Lupus and other rheumatic auto immune illnesses don't respond so well

to AP. Even doctors who use AP give no hope for Sjogrens specifically, including

the big names listed here. I have either seen or talked with various such

doctors. Whitman even tried to steer me towards Plaquenil and seemed doubtful of

Doxy or Mino but put it on the table, just because I asked so much.

There is a tiny handful of people with Sjogrens who claim they are better. Now

it is not my job to doubt patients that have suffered. But I cannot ignore the

facts. There aren't many SS patients on here or stories posted on the other

board, but here is the breakdown. A few NO change. A few claim they are

improved, but then you ask the Q's, and they aren't really that much better. One

such person takes Evoxac and says that now makes her close to normal as far as

saliva, whereas before didn't do anything. It didn''t do anything for me either

but even if it did post AP like it does for her, I can't take that junk again

with its ridiculous side effects. Another girl said her eyes are better, but her

eyes weren't bad enough for her to get plugs like me. And she doesn't wear

contacts and that's the true test as your eyes have to be completely healthy to

be able to withstand the added moisture loss from contact lens wear.

To add to the problem, I not only dealing with Sjogrens but constant nausea,

light headedness, dizziness and peripheral neuropathy. My eyes are still dry and

painful, no way can I stick my contacts back in, my vision is frequently so

blurry, my mouth is still a nasty cotton mouth and i wake to drink all night, my

throat is still dry and hard to talk, nose still dry and hard to breath,

feminine dryness, arm pits no longer sweat but that is more related to the

neuropathy I assume. Stomach still bloated all the time, I am little and eat

little but can't get back to my normal weight no matter what, despite a

relatively normal thyroid (and yes I have had much more than TSH done tons of

times). My face and body is full of pimples like I never before had, worse than

teenage acne some get. I have to take stuff to be able to go to the bathroom my

system is so sluggish. The neuropathy feels like my hands, feet, legs are

constantly being electrocuted. Other times

my legs feel like heavy tree trunks and sometimes my hands are so numb I drop

things. All this stuff combined and I cannot sleep as I am too busy putting in

eye drops, drinking water all night long, putting in saline wash inside the nose

so I can breath just a little, waking up in neuropathy pain. Body tired from

fighting the pain, tired from not sleeping. How can AP not help with a single

symptom?

I have done the cleanses, all natural raw food diets, gluten free, diet, LDN,

taken TONS of recommended supplements, taken the Doxy, everything. No relief. I

hate living like this and the ONLY thing that gave me hope was AP. Yet I am

completely and totally disappointed like I never imagined. There is nothing

worse in life than losing your health. Losing your job, being left by a

significant other, and all sorts of other troubles are nothing. There's a way

out with most other negative experiences. I have been through so much in life

and this takes the cake.

I just wanted to say that while AP can do miracles for some, and yet does

nothing for others, even damage is possible, it's not completely without risks.

I'd love to think there is still hope, but honestly I don't know where I would

derive it from. I wish AP worked for me, I even added Zithromax to no avail. I

don't know if there is a point in continuing to take it along with all the

supplements.

I'd appreciate if a certain someone doesn't reply to this. She's caused me

nothing but heartache. While I have her on my spam filter and never see her

group emails anymore, if she replies, then anyone who replies after her, because

her name is in the body of the mail from before, those too will go in the junk

folder so I will miss it all. She knows who she is. Everyone else here has been

so kind and supportive. I appreciate that much more than needless criticism.

There's enough to be depressed about as it is.

Thanks.

[Guest guest]

Hi Vicki...no, the DRs are not sure what happened...just that I had a severe, it

took a few months to build up....case of hypersensitivity to something...I have

been off the mino for several years...the jury is still out that the mino may

have caused my lung condition...minocin has caused this lung condition,

documented cases...in patients that were on minocin for skin conditions,

acne..etc....they note cases of OB...in med papers..so my DR...yanked me off the

mino...yeah, I was bummed but its ok...I muddle along...

Ihave seen several local DRs here that told me they could treat my RA/SD and

wanted to sell me crap...etc...I just walked out on them..One DR told me he has

cured SD...I am thinking to myself...oh yeah...then why are you in a little

strip mall office? I have walked out on my share...I would love to find a Dr

local that could treat me...but DR. Whitman has always come through for

me...when the other Drs here...have no ideas...he always does....It is a long

drive for us...we drive 12 hrs to see him...but for me....he is well worth

it...I adore him...

I hope you get some relief.....I have traveled to CA and to Boston to see

DRs...DR Whitman, has been my long time DR...since I became ill...so I know what

you mean about traveling. I wish you could go see him....is NJ far for you?

Debbie

rheumatic AP hasn't worked for me, Long story

I have been on AP for a full year and I feel zero changes. I realize it takes

time, but ...shouldn't I have *some* improvement at least? I can't imagine that

at the 2 year mark I would just wake up so much better. It seems logical to me

it would be gradual...if at all.

I feel like AP really only helps RA and Scleroderma. It seems the Sjogrens

cases like mine, Lupus and other rheumatic auto immune illnesses don't respond

so well to AP. Even doctors who use AP give no hope for Sjogrens specifically,

including the big names listed here. I have either seen or talked with various

such doctors. Whitman even tried to steer me towards Plaquenil and seemed

doubtful of Doxy or Mino but put it on the table, just because I asked so much.

There is a tiny handful of people with Sjogrens who claim they are better. Now

it is not my job to doubt patients that have suffered. But I cannot ignore the

facts. There aren't many SS patients on here or stories posted on the other

board, but here is the breakdown. A few NO change. A few claim they are

improved, but then you ask the Q's, and they aren't really that much better. One

such person takes Evoxac and says that now makes her close to normal as far as

saliva, whereas before didn't do anything. It didn''t do anything for me either

but even if it did post AP like it does for her, I can't take that junk again

with its ridiculous side effects. Another girl said her eyes are better, but her

eyes weren't bad enough for her to get plugs like me. And she doesn't wear

contacts and that's the true test as your eyes have to be completely healthy to

be able to withstand the added moisture loss from contact lens wear.

To add to the problem, I not only dealing with Sjogrens but constant nausea,

light headedness, dizziness and peripheral neuropathy. My eyes are still dry and

painful, no way can I stick my contacts back in, my vision is frequently so

blurry, my mouth is still a nasty cotton mouth and i wake to drink all night, my

throat is still dry and hard to talk, nose still dry and hard to breath,

feminine dryness, arm pits no longer sweat but that is more related to the

neuropathy I assume. Stomach still bloated all the time, I am little and eat

little but can't get back to my normal weight no matter what, despite a

relatively normal thyroid (and yes I have had much more than TSH done tons of

times). My face and body is full of pimples like I never before had, worse than

teenage acne some get. I have to take stuff to be able to go to the bathroom my

system is so sluggish. The neuropathy feels like my hands, feet, legs are

constantly being electrocuted. Other times

my legs feel like heavy tree trunks and sometimes my hands are so numb I drop

things. All this stuff combined and I cannot sleep as I am too busy putting in

eye drops, drinking water all night long, putting in saline wash inside the nose

so I can breath just a little, waking up in neuropathy pain. Body tired from

fighting the pain, tired from not sleeping. How can AP not help with a single

symptom?

I have done the cleanses, all natural raw food diets, gluten free, diet, LDN,

taken TONS of recommended supplements, taken the Doxy, everything. No relief. I

hate living like this and the ONLY thing that gave me hope was AP. Yet I am

completely and totally disappointed like I never imagined. There is nothing

worse in life than losing your health. Losing your job, being left by a

significant other, and all sorts of other troubles are nothing. There's a way

out with most other negative experiences. I have been through so much in life

and this takes the cake.

I just wanted to say that while AP can do miracles for some, and yet does

nothing for others, even damage is possible, it's not completely without risks.

I'd love to think there is still hope, but honestly I don't know where I would

derive it from. I wish AP worked for me, I even added Zithromax to no avail. I

don't know if there is a point in continuing to take it along with all the

supplements.

I'd appreciate if a certain someone doesn't reply to this. She's caused me

nothing but heartache. While I have her on my spam filter and never see her

group emails anymore, if she replies, then anyone who replies after her, because

her name is in the body of the mail from before, those too will go in the junk

folder so I will miss it all. She knows who she is. Everyone else here has been

so kind and supportive. I appreciate that much more than needless criticism.

There's enough to be depressed about as it is.

Thanks.