Re: Mr Immunologist Visit & TB Drug Update

[Guest guest]

Oh sweetie, that's the best news ever.... Hoping you feel better real soon..and yes a cure would be nice..hehehe, for us all.. Thank you for standing up and saying I'll try it..and being the trial rat..lol.. Love ya ISH.... And hoping you and G weller days ahead...

Hugs,

[Guest guest]

> Dear Family & Friends,

>

> I have just returned from my visit with my specialist physician, Mr

> Immunologist.

>

> We have some mixed news to tell you. I say mixed because it is a

little up

> in the air at this point and I don't want anyone getting too

excited,

> especially myself should this not be actually the case.

>

> I took Rifampin for a week, full dose. If you remember I had to

stop it

> because I developed " Flu Syndrome. " However.... this drug stays in

your

> system which is why I have been feeling so sick because I've had

the " flu

> syndrome " not the flu.

>

> Now... the drug itself, is an anti-TB medication. The guinea pig

TB meds.

>

> BUT...

>

> It has flattened my ESR level to normal. That's right. NORMAL.

From markers

> of anywhere from 70+ my ESR this time around was 20. Right on the

line of

> normal.

>

> Now of course this could be a fluke result because I have only had

this one

> blood test since I have had the medication. But we also have to

look at what

> that medication STOPPED - the night sweats, fevers, and rashes all

went away

> until this Wednesday - which was after the blood tests were taken.

So with

> the fact that Rifampin can stay in your system the most likely

event is that

> it is the cause of the low ESR.

>

> My CRP was slightly lower than before but still stupidly high. My

ACE had

> risen only 2 points, my liver function stats had dropped quite

considerably,

> some had even halved. The globulins were slightly lower, still

raised but

> lower. Some biochem markers are screwy but nothing drastic and I

forgot to

> ask about the potassium. Well he said I looked thinner, so why

would I

> remember potassium? LOL.

>

> Although I am still sick, and there are raised markers, the one

week of TB

> Meds is still a sign showing that this medication made an impact.

Based on

> that we are letting my body detox from the other drugs that did

not agree

> with me until the new year. This way I can also get over the " Flu

Syndrome. "

>

> January 2nd I have a base line blood test, ESR, CRP, ACE etc and

then Mon

> 5th of Jan I start Isonizad, another TB med. We are going about it

> differently though. I'm to take it Mon, Wed, Fri and Sat at half

dose for a

> month then have blood tests again.

>

> Isonizad is also used to treat Palatal Myoclonus. So for me, I get

to trial

> it for that too!

>

> My immunologist is " Encouraged " by my results. I also feel he is

on the

> right track. He was talking about different antibiotics, and other

> medications, so we are just going to keep going drug after drug

until we

> find the combination that works and I can tolerate. There will be

one or two

> or however many. I will not stop. He will not stop. We will keep

fighting

> and maybe - just maybe - there will be a cure?

>

> Even if it's a mix of immunosuppressants and TB meds to live a

normal life

> again - its worth it! What we all wouldn't give for that?

>

> The highlight of the visit was of course being told that I looked

thinner by

> at least two people and not actually weighing in any heavier! LOL!!

> Priorities here folks!

>

> I'm filled with hope. I want to hold you all, share tears of

frustration and

> joy, and fill your hearts with love and encouragement.

>

> I see friends shaking hands

> Saying " How do you do? "

> They're really saying

> " I love you. "

>

> Thank you for everything!

> isha

[Guest guest]

Good news, it is always good to hear that come around every now and then.

It show us all the hope we can have still. Stay the course, or should I

say, " just keep swimming " , my husband calls me " Dorie " , if you havn't seen

the movie " finding Nemo, then it's a must, and many us can relate to Dorie!

So I will close with, " just keep swimming " !

and your right I love you isha,

Marla

Mr Immunologist Visit & TB Drug Update

> Dear Family & Friends,

>

> I have just returned from my visit with my specialist physician, Mr

> Immunologist.

>

> We have some mixed news to tell you. I say mixed because it is a little up

> in the air at this point and I don't want anyone getting too excited,

> especially myself should this not be actually the case.

>

> I took Rifampin for a week, full dose. If you remember I had to stop it

> because I developed " Flu Syndrome. " However.... this drug stays in your

> system which is why I have been feeling so sick because I've had the " flu

> syndrome " not the flu.

>

> Now... the drug itself, is an anti-TB medication. The guinea pig TB meds.

>

> BUT...

>

> It has flattened my ESR level to normal. That's right. NORMAL. From

markers

> of anywhere from 70+ my ESR this time around was 20. Right on the line of

> normal.

>

> Now of course this could be a fluke result because I have only had this

one

> blood test since I have had the medication. But we also have to look at

what

> that medication STOPPED - the night sweats, fevers, and rashes all went

away

> until this Wednesday - which was after the blood tests were taken. So with

> the fact that Rifampin can stay in your system the most likely event is

that

> it is the cause of the low ESR.

>

> My CRP was slightly lower than before but still stupidly high. My ACE had

> risen only 2 points, my liver function stats had dropped quite

considerably,

> some had even halved. The globulins were slightly lower, still raised but

> lower. Some biochem markers are screwy but nothing drastic and I forgot to

> ask about the potassium. Well he said I looked thinner, so why would I

> remember potassium? LOL.

>

> Although I am still sick, and there are raised markers, the one week of TB

> Meds is still a sign showing that this medication made an impact. Based on

> that we are letting my body detox from the other drugs that did not agree

> with me until the new year. This way I can also get over the " Flu

Syndrome. "

>

> January 2nd I have a base line blood test, ESR, CRP, ACE etc and then Mon

> 5th of Jan I start Isonizad, another TB med. We are going about it

> differently though. I'm to take it Mon, Wed, Fri and Sat at half dose for

a

> month then have blood tests again.

>

> Isonizad is also used to treat Palatal Myoclonus. So for me, I get to

trial

> it for that too!

>

> My immunologist is " Encouraged " by my results. I also feel he is on the

> right track. He was talking about different antibiotics, and other

> medications, so we are just going to keep going drug after drug until we

> find the combination that works and I can tolerate. There will be one or

two

> or however many. I will not stop. He will not stop. We will keep fighting

> and maybe - just maybe - there will be a cure?

>

> Even if it's a mix of immunosuppressants and TB meds to live a normal life

> again - its worth it! What we all wouldn't give for that?

>

> The highlight of the visit was of course being told that I looked thinner

by

> at least two people and not actually weighing in any heavier! LOL!!

> Priorities here folks!

>

> I'm filled with hope. I want to hold you all, share tears of frustration

and

> joy, and fill your hearts with love and encouragement.

>

> I see friends shaking hands

> Saying " How do you do? "

> They're really saying

> " I love you. "

>

> Thank you for everything!

> isha

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://www.elderwyn.com/neurosarcoidosis/chat.php

>

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>

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>

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>

> Personal Complaints or problems:-

> Please email the moderators

> mailto:Neurosarcoidosis-owner

>

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> 1) Individual email - means that every email sent to the list you receive.

> 2) Daily Digest - sends you 25 messages in one single email for you to

browse. This is an excellent option if you receive alot of email.

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> http://groups.yahoo.com/group/Neurosarcoidosis/join

>

> To subscribe email neurosarcoidosis-subscribe

> To unsubscribe email neurosarcoidosis-unsubscribe

>

> The moderators will not be doing it for you!

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

> Come stand by my side where I am going,

> Take my hand if I should stumble and fall,

> It's the strength and love that you share,

> That gives me what I need most of all.

> - Hoyt Axton

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

>

[Guest guest]

That's great Aisha! Slowly, but surely, I hope to see you get

better from this nasty disease. You've got so much talent and

creativity just trying to burst out of you, but its so hard when

you're sick , I know. So take one step at a time and hopefully you

and the dr. can eventually find the right combo of meds for you to

be able to function and thrive like a healthy (or as close to

healthy as you can get!) human being! I'm glad for you , you have

been through so much already...... Luv, Debbie T.

> Dear Family & Friends,

>

> I have just returned from my visit with my specialist physician, Mr

> Immunologist.

>

> We have some mixed news to tell you. I say mixed because it is a

little up

> in the air at this point and I don't want anyone getting too

excited,

> especially myself should this not be actually the case.

>

> I took Rifampin for a week, full dose. If you remember I had to

stop it

> because I developed " Flu Syndrome. " However.... this drug stays in

your

> system which is why I have been feeling so sick because I've had

the " flu

> syndrome " not the flu.

>

> Now... the drug itself, is an anti-TB medication. The guinea pig

TB meds.

>

> BUT...

>

> It has flattened my ESR level to normal. That's right. NORMAL.

From markers

> of anywhere from 70+ my ESR this time around was 20. Right on the

line of

> normal.

>

> Now of course this could be a fluke result because I have only had

this one

> blood test since I have had the medication. But we also have to

look at what

> that medication STOPPED - the night sweats, fevers, and rashes all

went away

> until this Wednesday - which was after the blood tests were taken.

So with

> the fact that Rifampin can stay in your system the most likely

event is that

> it is the cause of the low ESR.

>

> My CRP was slightly lower than before but still stupidly high. My

ACE had

> risen only 2 points, my liver function stats had dropped quite

considerably,

> some had even halved. The globulins were slightly lower, still

raised but

> lower. Some biochem markers are screwy but nothing drastic and I

forgot to

> ask about the potassium. Well he said I looked thinner, so why

would I

> remember potassium? LOL.

>

> Although I am still sick, and there are raised markers, the one

week of TB

> Meds is still a sign showing that this medication made an impact.

Based on

> that we are letting my body detox from the other drugs that did

not agree

> with me until the new year. This way I can also get over the " Flu

Syndrome. "

>

> January 2nd I have a base line blood test, ESR, CRP, ACE etc and

then Mon

> 5th of Jan I start Isonizad, another TB med. We are going about it

> differently though. I'm to take it Mon, Wed, Fri and Sat at half

dose for a

> month then have blood tests again.

>

> Isonizad is also used to treat Palatal Myoclonus. So for me, I get

to trial

> it for that too!

>

> My immunologist is " Encouraged " by my results. I also feel he is

on the

> right track. He was talking about different antibiotics, and other

> medications, so we are just going to keep going drug after drug

until we

> find the combination that works and I can tolerate. There will be

one or two

> or however many. I will not stop. He will not stop. We will keep

fighting

> and maybe - just maybe - there will be a cure?

>

> Even if it's a mix of immunosuppressants and TB meds to live a

normal life

> again - its worth it! What we all wouldn't give for that?

>

> The highlight of the visit was of course being told that I looked

thinner by

> at least two people and not actually weighing in any heavier! LOL!!

> Priorities here folks!

>

> I'm filled with hope. I want to hold you all, share tears of

frustration and

> joy, and fill your hearts with love and encouragement.

>

> I see friends shaking hands

> Saying " How do you do? "

> They're really saying

> " I love you. "

>

> Thank you for everything!

> isha

[Guest guest]

Thank you everyone.

Please remember it was only the ESR that was reduced to normal, and it was

only one blood test... I don't want to get everyone's hopes up for a cure

just yet. It may only be a partial help or it may only work for me or it

might have been a fluke testing time... when I asked why the high CRP if the

ESR was normal he didn't know. We can only assume that the drugs have killed

off some of the bacteria related to the m. tuberculosis associated with

studies finding connections between it and sarcoidosis.

The even worse news is that even with an ESR of 20, I felt no different. So

there is still a long road ahead and I am very much in guinea pig mode right

now. I am determined however to keep being said guinea pig till we get a

cure or establish a healthy functional lifestyle again.

This has just shown that it isn't out of the question so NEVER stop pursuing

treatment!

Sorry if I'm behind in posts but I'm very tired at the moment. Know I am

reading your posts and will reply when I can.

Love Aisha.

[Guest guest]

Well, if you are going to be a rodent, Guinea pig isn't a bad choice. I'm

back to feeling like a rat on a treadmill. Sam was released from the psych

unit last night. I take her to school at 7am, then pick her up at 1:30pm &

drive 40 min. to Indianapolis for outpatent therapy from 2-6pm. Tonight I

just stayed in Indy, rather than drive home & back. Sam's little sister

had a Christmas program, so we went to that after therapy. I've sent

a picture of ; doesn't she look beautiful? I have the most beautiful

grandchildren (no; I'm not biased!). Tomorrow night after therapy Sam & I

are going to an Indiana Pacers game. For those ignorant souls who are not

basketball fans, Indiana is known for " Hoosier Hysteria " and the Pacers are

playing great this year. One of the OB docs gave me tickets. Brad will be

there too, but we have better seats!! 8th row! I'm going to see if

is up for a visit while Sam's in therapy. Well, I'm going to finish my

email, then hit the sack. This outpatient therapy routine is 5 days a week,

for at least 1-2 weeks. Larry the Neuro bumped up my Neurontin, which

should help with all the extra driving. Love to all, Rose

Re: Mr Immunologist Visit & TB Drug Update

> Thank you everyone.

>

> Please remember it was only the ESR that was reduced to normal, and it was

> only one blood test... I don't want to get everyone's hopes up for a cure

> just yet. It may only be a partial help or it may only work for me or it

> might have been a fluke testing time... when I asked why the high CRP if

the

> ESR was normal he didn't know. We can only assume that the drugs have

killed

> off some of the bacteria related to the m. tuberculosis associated with

> studies finding connections between it and sarcoidosis.

>

> The even worse news is that even with an ESR of 20, I felt no different.

So

> there is still a long road ahead and I am very much in guinea pig mode

right

> now. I am determined however to keep being said guinea pig till we get a

> cure or establish a healthy functional lifestyle again.

>

> This has just shown that it isn't out of the question so NEVER stop

pursuing

> treatment!

>

> Sorry if I'm behind in posts but I'm very tired at the moment. Know I am

> reading your posts and will reply when I can.

>

> Love Aisha.

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://www.elderwyn.com/neurosarcoidosis/chat.php

>

> Message Archives and Digest Attachment Pictures:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

> Bookmarks:-

> Add a website URL you have found useful.

> http://groups.yahoo.com/group/Neurosarcoidosis/links

>

> Personal Complaints or problems:-

> Please email the moderators

> mailto:Neurosarcoidosis-owner

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you receive.

> 2) Daily Digest - sends you 25 messages in one single email for you to

browse. This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into eGroups at your

convenience and receive no email.

> To modify your subscription settings please visit:-

> http://groups.yahoo.com/group/Neurosarcoidosis/join

>

> To subscribe email neurosarcoidosis-subscribe

> To unsubscribe email neurosarcoidosis-unsubscribe

>

> The moderators will not be doing it for you!

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

> Come stand by my side where I am going,

> Take my hand if I should stumble and fall,

> It's the strength and love that you share,

> That gives me what I need most of all.

> - Hoyt Axton

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

>

[Guest guest]

Or if she could just functiion as a healthy rodent; that would be a start.

Rosie the Lab Rat

Re: Mr Immunologist Visit & TB Drug Update

> That's great Aisha! Slowly, but surely, I hope to see you get

> better from this nasty disease. You've got so much talent and

> creativity just trying to burst out of you, but its so hard when

> you're sick , I know. So take one step at a time and hopefully you

> and the dr. can eventually find the right combo of meds for you to

> be able to function and thrive like a healthy (or as close to

> healthy as you can get!) human being! I'm glad for you , you have

> been through so much already...... Luv, Debbie T.

>

>

>

>

> > Dear Family & Friends,

> >

> > I have just returned from my visit with my specialist physician, Mr

> > Immunologist.

> >

> > We have some mixed news to tell you. I say mixed because it is a

> little up

> > in the air at this point and I don't want anyone getting too

> excited,

> > especially myself should this not be actually the case.

> >

> > I took Rifampin for a week, full dose. If you remember I had to

> stop it

> > because I developed " Flu Syndrome. " However.... this drug stays in

> your

> > system which is why I have been feeling so sick because I've had

> the " flu

> > syndrome " not the flu.

> >

> > Now... the drug itself, is an anti-TB medication. The guinea pig

> TB meds.

> >

> > BUT...

> >

> > It has flattened my ESR level to normal. That's right. NORMAL.

> From markers

> > of anywhere from 70+ my ESR this time around was 20. Right on the

> line of

> > normal.

> >

> > Now of course this could be a fluke result because I have only had

> this one

> > blood test since I have had the medication. But we also have to

> look at what

> > that medication STOPPED - the night sweats, fevers, and rashes all

> went away

> > until this Wednesday - which was after the blood tests were taken.

> So with

> > the fact that Rifampin can stay in your system the most likely

> event is that

> > it is the cause of the low ESR.

> >

> > My CRP was slightly lower than before but still stupidly high. My

> ACE had

> > risen only 2 points, my liver function stats had dropped quite

> considerably,

> > some had even halved. The globulins were slightly lower, still

> raised but

> > lower. Some biochem markers are screwy but nothing drastic and I

> forgot to

> > ask about the potassium. Well he said I looked thinner, so why

> would I

> > remember potassium? LOL.

> >

> > Although I am still sick, and there are raised markers, the one

> week of TB

> > Meds is still a sign showing that this medication made an impact.

> Based on

> > that we are letting my body detox from the other drugs that did

> not agree

> > with me until the new year. This way I can also get over the " Flu

> Syndrome. "

> >

> > January 2nd I have a base line blood test, ESR, CRP, ACE etc and

> then Mon

> > 5th of Jan I start Isonizad, another TB med. We are going about it

> > differently though. I'm to take it Mon, Wed, Fri and Sat at half

> dose for a

> > month then have blood tests again.

> >

> > Isonizad is also used to treat Palatal Myoclonus. So for me, I get

> to trial

> > it for that too!

> >

> > My immunologist is " Encouraged " by my results. I also feel he is

> on the

> > right track. He was talking about different antibiotics, and other

> > medications, so we are just going to keep going drug after drug

> until we

> > find the combination that works and I can tolerate. There will be

> one or two

> > or however many. I will not stop. He will not stop. We will keep

> fighting

> > and maybe - just maybe - there will be a cure?

> >

> > Even if it's a mix of immunosuppressants and TB meds to live a

> normal life

> > again - its worth it! What we all wouldn't give for that?

> >

> > The highlight of the visit was of course being told that I looked

> thinner by

> > at least two people and not actually weighing in any heavier! LOL!!

> > Priorities here folks!

> >

> > I'm filled with hope. I want to hold you all, share tears of

> frustration and

> > joy, and fill your hearts with love and encouragement.

> >

> > I see friends shaking hands

> > Saying " How do you do? "

> > They're really saying

> > " I love you. "

> >

> > Thank you for everything!

> > isha

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> http://www.elderwyn.com/neurosarcoidosis/chat.php

>

> Message Archives and Digest Attachment Pictures:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

> Bookmarks:-

> Add a website URL you have found useful.

> http://groups.yahoo.com/group/Neurosarcoidosis/links

>

> Personal Complaints or problems:-

> Please email the moderators

> mailto:Neurosarcoidosis-owner

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you receive.

> 2) Daily Digest - sends you 25 messages in one single email for you to

browse. This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into eGroups at your

convenience and receive no email.

> To modify your subscription settings please visit:-

> http://groups.yahoo.com/group/Neurosarcoidosis/join

>

> To subscribe email neurosarcoidosis-subscribe

> To unsubscribe email neurosarcoidosis-unsubscribe

>

> The moderators will not be doing it for you!

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

> Come stand by my side where I am going,

> Take my hand if I should stumble and fall,

> It's the strength and love that you share,

> That gives me what I need most of all.

> - Hoyt Axton

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

>

[Guest guest]

She is really a beauty.

Sharon

Re: Mr Immunologist Visit & TB Drug Update> Thank you everyone.>> Please remember it was only the ESR that was reduced to normal, and it was> only one blood test... I don't want to get everyone's hopes up for a cure> just yet. It may only be a partial help or it may only work for me or it> might have been a fluke testing time... when I asked why the high CRP ifthe> ESR was normal he didn't know. We can only assume that the drugs havekilled> off some of the bacteria related to the m. tuberculosis associated with> studies finding connections between it and sarcoidosis.>> The even worse news is that even with an ESR of 20, I felt no different.So> there is still a long road ahead and I am very much in guinea pig moderight> now. I am determined however to keep being said guinea pig till we get a> cure or establish a healthy functional lifestyle again.>> This has just shown that it isn't out of the question so NEVER stoppursuing> treatment!>> Sorry if I'm behind in posts but I'm very tired at the moment. Know I am> reading your posts and will reply when I can.>> Love Aisha.>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>> Live Group Chat:-> Mondays & Fridays 10pm EST USA> http://www.elderwyn.com/neurosarcoidosis/chat.php>> Message Archives and Digest Attachment Pictures:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database>> Bookmarks:-> Add a website URL you have found useful.> http://groups.yahoo.com/group/Neurosarcoidosis/links>> Personal Complaints or problems:-> Please email the moderators> mailto:Neurosarcoidosis-owner >> Subscription Details:-> 1) Individual email - means that every email sent to the list you receive.> 2) Daily Digest - sends you 25 messages in one single email for you tobrowse. This is an excellent option if you receive alot of email.> 3) Web only/No mail - means that you can pop into eGroups at yourconvenience and receive no email.> To modify your subscription settings please visit:-> http://groups.yahoo.com/group/Neurosarcoidosis/join>> To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe >> The moderators will not be doing it for you!>> ~~~~ *** ~~~ *** ~~~ *** ~~~~>> Come stand by my side where I am going,> Take my hand if I should stumble and fall,> It's the strength and love that you share,> That gives me what I need most of all.> - Hoyt Axton>> ~~~~ *** ~~~ *** ~~~ *** ~~~~>>>