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Hi Barb, I have have sarcoid since April of 2003. My job was my whole life and identity. When I lost it because of my illness, I was a complete mess. Then I found this group. As Terri had said , they are a marvelous group that are very supporting and caring . They helped me so much. Normally I am a very shy and introverted person and would never think of reaching out to a group of people I didn't know either . But I took a chance and did, and I am so glad I did. I am sure you will be happy as well. Everyone will be able to answer any questions you may have and just provide support as you live with this awful

illness. Hugs, DebbieBarb wrote: I saw the group on line. I have had Neurosarcoidosis since 2000. Probably before that but they had to go through a couple other diagnoses first. I have been on Disability since June of 2004. I was a nurse and it is getting harder and harder for me to walk. So, I had to quit working. I use a cane but I fall frequently. Stairs are a real bummer. I am on lots of meds, many of the meds didn't work for me. Thank

goodness I have good doctors. Since I left work I have felt alone in spite of my family. I have never been a Joiner, it really isn't like me to be part of a group like this but I thought, "what could it hurt?" to see how other people with the same illness are handling it. So here I am, taking a chance.Barb J.

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Hi Barb, I'm glad you took a chance, you couldn't have picked a better group. I have not been a member for very long, but they have all welcomed me as if I had been here from the beginning. I'm sorry we have met under these circumstances, sarc can be very cruel about what it takes from us; but it can not defeat who we are. Your in good company, there are quite a few nurses and other medical folk in this group, I look forward to talking to you more////ConnieBarb wrote: I saw the group on line.

I have had Neurosarcoidosis since 2000. Probably before that but they had to go through a couple other diagnoses first. I have been on Disability since June of 2004. I was a nurse and it is getting harder and harder for me to walk. So, I had to quit working. I use a cane but I fall frequently. Stairs are a real bummer. I am on lots of meds, many of the meds didn't work for me. Thank goodness I have good doctors. Since I left work I have felt alone in spite of my family. I have never been a Joiner, it really isn't like me to be part of a group like this but I thought, "what could it hurt?" to see how other people with the same illness are handling it. So here I am, taking a chance.Barb J. __________________________________________________

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Hi Barb, I'm glad you took a chance, you couldn't have picked a better group. I have not been a member for very long, but they have all welcomed me as if I had been here from the beginning. I'm sorry we have met under these circumstances, sarc can be very cruel about what it takes from us; but it can not defeat who we are. Your in good company, there are quite a few nurses and other medical folk in this group, I look forward to talking to you more////ConnieBarb wrote: I saw the group on line.

I have had Neurosarcoidosis since 2000. Probably before that but they had to go through a couple other diagnoses first. I have been on Disability since June of 2004. I was a nurse and it is getting harder and harder for me to walk. So, I had to quit working. I use a cane but I fall frequently. Stairs are a real bummer. I am on lots of meds, many of the meds didn't work for me. Thank goodness I have good doctors. Since I left work I have felt alone in spite of my family. I have never been a Joiner, it really isn't like me to be part of a group like this but I thought, "what could it hurt?" to see how other people with the same illness are handling it. So here I am, taking a chance.Barb J. __________________________________________________

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Hi Barb, I'm glad you took a chance, you couldn't have picked a better group. I have not been a member for very long, but they have all welcomed me as if I had been here from the beginning. I'm sorry we have met under these circumstances, sarc can be very cruel about what it takes from us; but it can not defeat who we are. Your in good company, there are quite a few nurses and other medical folk in this group, I look forward to talking to you more////ConnieBarb wrote: I saw the group on line.

I have had Neurosarcoidosis since 2000. Probably before that but they had to go through a couple other diagnoses first. I have been on Disability since June of 2004. I was a nurse and it is getting harder and harder for me to walk. So, I had to quit working. I use a cane but I fall frequently. Stairs are a real bummer. I am on lots of meds, many of the meds didn't work for me. Thank goodness I have good doctors. Since I left work I have felt alone in spite of my family. I have never been a Joiner, it really isn't like me to be part of a group like this but I thought, "what could it hurt?" to see how other people with the same illness are handling it. So here I am, taking a chance.Barb J. __________________________________________________

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Hello, I was diagnosed with neurosarcoid over a year ago, and have

been on prednisone for that time. Docters tried Imuran but side

effects were overwhelming, and so I was put on methotrexate about

three months ago, but my most recent MRI indicates that I have stopped

responding to treatment and I have no insurance is there anywhere I

can find some sort of help. Oh, yeah Social security has continued to

deny my claim, any help with that would be appreciated as well.

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FWIW one of Dr. Pfeiffer's co-workers has seen pyroluria clear up post

mercury chelation. He believes it's cause and effect.

S.

>

> Hi all,

>

> I live in Australia and have mild mercury, silver, aluminium, lead, tin,

> cadmium and arsenic toxicity and have 5 amalgams. My partner, Stu is

> pyroluric and severely mercury, lead and silver poisoned with no

amalgams

> (his mum has plenty amalgams). We both have severe gut flora

disturbances (I

> have no E. coli or enterococci and he has no beneficial bacterium at

all),

> pH irregularities (I'm too alkaline and he's way too acid) and his

pancreas

> has clapped out. We are both on very restricted GFCF diets that consist

> mainly of cruciferous veggies, pears and golden delicious apples and not

> much else other than brown rice, which controls symptoms. Our

symptoms used

> to be mental-depression, anxiety, anger etc and we still get grumpy

if we

> leave our diets and are still physical-joints, fatigue, muscle pain

etc. For

> 5 months we have been on Pfeiffer meds- me for overmethylation

(extrememly

> high dose Bs and Zn) and he for pyroluria (Zn and B6/P5P). He is also

> undermethylating but going untreated as per doctors advice. Those of you

> asking about copper recently may be interested in this site

> http://www.alternativementalhealth.com/articles/walsh.htm#Co, Copper and

> zinc need to be in the right balance (as do all the minerals) and

the right

> amount of zinc will balance out the copper, as it did with me.

>

> Stu's zinc was very low and the doc has told him to wait until Dec

before

> commencing chelation with DMSA. I think I'm going to go the zeolite for

> myself. We are both very low in other minerals as well.

>

> I start my amalgam removal next week and read all your posts with

interest.

> I mainly write just to let you know I'm here and but also to query

about the

> methylation issue with amalgam removal. One of the B's I'm on is

sublingual

> methylcobalamin, should I discontinue this while I do the removal

protocol?

> If so, for how long? We both have liver phase 1/11 imbalances and I

wonder

> about the effect of the cruciferous veggies (sulfur) on this.

Unfortunately

> our main sensitivities are to salicylates and amines so inclusion of

other

> foods isn't possible right now. Could the sulfurous food be

perpetuating the

> liver imbalances? What a vicious cycle!

>

> Thanks for your useful info so far,

>

> Kelle

>

>

>

>

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Hi , You have found a whole group of IPF'ers.. so ask anything you want and tell us a little about yourself.If you have been reading our posts you know we are all in each others lives. We are indeed an Air Family.So tell us when you were diagnosed, where you live, about your family and anything else you are comfortable sharing.If this is your first visit here, I am so very sorry you needed to find us. You'll find someone at about any stage youare curious about. Welcome. Love & Prayers, PeggyFlorida,  IPF 2004'To get something you had, you have to do something you never did'When God takes something from your grasp, He's not pushing you, but  merely opening your hands to receive something better. Hello I am looking forward to chatting with others with IPF

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,

I'm sorry to read about your diagnosis. You have came to the right place for

support. We have a wonderful group of people here on this board.

PF is a scary disease, especially right after diagnosis when you are learning

what it's all about. I believe firmly that " knowledge is power. " It is important

to get the answers you are looking for to feel better about the diagnosis.

As Peggy said, there is someone at about any stage of the disease. I happen to

have had slow progression over many years. I was only diagnosed in 1/06 but have

had symptoms since my early childhood with a few incorrect diagnosis. I'm 33,

married for 15 years and we have a 12 year old son.

We are here for you, !

33 FL

IPF dx 1/06

>

>

>

>

> Hello I am looking forward to chatting with others with IPF

>

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