Who beleives in the cure?

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Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 8/29/2006 12:01 PM (GMT -7)   

Most of the people on this forum sounds somekind reconciled with their diseases, doesn't diggin on it anymore, seems they had lost all their hope for cure, they are just getting used to live with their disease. Most of the people are just posting themes looking for sympathy, or just to share with someone their hardships. How they switch from one drug to another, how they ache. As I see very few are those who still has the spark that says "I will live normally again, I want to, and that's why I am looking for and belive in the cure". The absence of enough such people realy makes me angry. But I think that if I also loose my faith for cure, I may also be like that;( Well, because I seriously cannot accept that way of living I would have 2 possibilities, or the get cured, or to die. And thus will not change until I'm alive.

 

You all people, do not repress your faith.

Soon there will be a realy good tratment or even a cure for many of the AI diseases. I bet on.
The science goes very far.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/29/2006 1:02 PM (GMT -7)   

Aaah, no Marius! Dude...I'm all for the future man! That's why I'm in the field I'm in! I am specializing in Rheumatics & Autoimmunity with the hopes of using a nice fat PhD in research. :-) It's going to happen.

I feel I have all of the hope in the world....sometimes stupidly so. Because like you mentioned...I can't imagine a whole lifetime being the way I am NOW. That would be a horror.

What I feel most people and myself included are dealing with is the struggle to get to point of consistancy.  For example, the AI conditions I have sent me bee-line to the ER & 5 days in the hospital...so it's kinda hard to shake the sometimes "hard reality" that living with an out of control disease really does take "accepting" disease and sorrow for a while.

Every individual is complex and so many people have steady & controlled symptoms and live normal happy lives...while many others have a day to day struggle with waking up and the entire days goal just getting through the hours.

You do bring up a very important issue.  And yes, no one should lose faith no matter how advanced a disease state may be.

Keep on being you Marius! I am sure that many others will gain from your strength.  Like for me?...reading your post did jump start my gusto for "let's kick this AI in the butt!" and sometimes that kick is needed.

Be well,

erin


Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 8/29/2006 3:15 PM (GMT -7)   
erin kachmar said...

Aaah, no Marius! Dude...I'm all for the future man! That's why I'm in the field I'm in! I am specializing in Rheumatics & Autoimmunity with the hopes of using a nice fat PhD in research. :-) It's going to happen.

I feel I have all of the hope in the world....sometimes stupidly so. Because like you mentioned...I can't imagine a whole lifetime being the way I am NOW. That would be a horror.

What I feel most people and myself included are dealing with is the struggle to get to point of consistancy.  For example, the AI conditions I have sent me bee-line to the ER & 5 days in the hospital...so it's kinda hard to shake the sometimes "hard reality" that living with an out of control disease really does take "accepting" disease and sorrow for a while.

Every individual is complex and so many people have steady & controlled symptoms and live normal happy lives...while many others have a day to day struggle with waking up and the entire days goal just getting through the hours.

You do bring up a very important issue.  And yes, no one should lose faith no matter how advanced a disease state may be.

Keep on being you Marius! I am sure that many others will gain from your strength.  Like for me?...reading your post did jump start my gusto for "let's kick this AI in the butt!" and sometimes that kick is needed.

Be well,

erin

 
It needs constancy erin.
wish you luck with good stable long remission to follow your vocation easily.
Me is the same. Doesen metter  if I get better or if I get worse I shall work for the future too.
It is illogical to be like that, it's all about balance. Since the things had once came into balance then they can get balanced again. It's all about science. It's all about the right approach. It's all about balance. There is a hope!

Sarahruth
New Member


Date Joined Aug 2006
Total Posts : 5
   Posted 8/29/2006 3:18 PM (GMT -7)   
On the contraty. I am new to this forum and just getting started in reading posts and doing resposes. I fully expected to be in a wheel chair about 3 years ago. No answers. Only accidentally found that the solution to such terrible pain was an antibiotic. I took cipro for UTI and all pain disappeared in about 3 days. I thought the success was from Celebrex, which I was given at the same time. Wrong. All pain came back in a month. Six months later I had mycoplasma pneumonia and took cipro again. Sure enough-- all pain went away. My rheumatologist would not give me cipro to stay on. Too dangerous for long term. He gave me minocin (200 mg daily) This is the regiment recommended by the American College of Rheumatologists. It works. There is a very big problem with minocin. It has been around for a very long time, there are many generic brands, it is very cheap, and there is no money to made by the drug companies. For anyone in constant pain, try it. It might take 2 weeks to become effective. You might have nothing to loose but the pain. Apparently the cause is mycoplasmas. I had never even heard of these things. They are very illusive, invasive and cause horrible problems.
After almost 10 years I have my life back. You can do it too!! Keep going till you find your answer. I'll bet I have over 1000 hours on Google searching for answers. I could write a thesis on it. I am here because I have been so active that I have strained my back in some way:)
Good luck, and no you do not have to accept the way you are living.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/29/2006 4:29 PM (GMT -7)   
Thanks so much sarahruth,
You're right...we've lots of discussions here about antibiotic treatments. I believe in them. I've always felt better when I am on them.
Take care & keep posting!
Erin
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


RandomDave
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 8/30/2006 9:14 AM (GMT -7)   
Hmmm interesting concept. To me the idea of a cure is not something I give much thought to at all. It seems almost irrelevant. Of course it would be nice, but it just isn't within my frame of reality. I'm all for hoping for a better future, but it's more important to me to make a better today. There's always something that will make you feel better right now. The hard part is finding it. For me it's things like hot tubs, relaxing with a book, taking a walk despite the pain. I don't think in terms of being cured forever, I think in terms of being cured for right now. You string enough right nows together and forever takes care of itself. Sometimes the day just sucks no matter what you do, but then there's always tomorrow to try something different. Hoping for a cure can be a bit of a double-edged sword. What you said about balance is the key I think. By all means hope for a cure, but even when it comes don't leave yourself in a postion to regret all the time lost while you were waiting for it.

As for sympathy and hardhip, I think a lot of us get a lot out of it being able to share with others who understand. For me, I get frustrated with my family and friends who don't get that it takes a lot for me to say "I can't..." and when I do say it, they think I said "I don't feel like it." People here understand what "I can't" means, and that probably explains a lot of why we share more of the "I can'ts" with each other than the "I cans"

When I read the sad postings from people asking for some kind of help, I think of them as needing mental and spritual help rather than anything else. I think they just need to talk to people who may not be in the exact same boat as them, but at least know whatthe boat looks like and have spent their fair share of time paddling.
-SLE, RA & PA....it's all about the acronyms!

-Current meds: Plaquenil, Sulfasalazine, and a little NSAID du jour for flavouring. Mmmmm NSAIDs.


lovetolive
New Member


Date Joined Aug 2006
Total Posts : 19
   Posted 8/30/2006 2:02 PM (GMT -7)   
I'm pretty new at posting here, but I have read alot, I mean ALOT of the posts. I do not agree that "most of the people here are just posting themes and looking for sympathy." I have found so much help here from what others who share my same illnesses have to say.There is no way that I would ever want to think I have to live the rest of my life like this. I am a realist however, and do believe that someday there will be a cure........but who knows if it will be in any of our life times? I live one day at a time, I am not looking for sympathy from anyone, just a shoulder to lean on when I need one. That's what I have found here.
 
Lola
Current DX : Lupus, Hypothyroidism, acute pancreatitis
 
Currents Meds: Plaquenil, Lorcet, ultram, synthroid, nexium, Lexapro, xanax


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 8/30/2006 2:06 PM (GMT -7)   
dave you spoke from my heart .... at first i was feeling bad that i vent here sometimes but it is because not only does my world not understand they dont care and for some reason this is a place for me to go to at times.  and i feel good if i can make someone else feel that i care about them too and the day they are having.  well enough said as u spoke from my heart already.  thanks for doing that dave.... yalinda tongue

missie1227
Veteran Member


Date Joined Nov 2005
Total Posts : 751
   Posted 8/30/2006 3:28 PM (GMT -7)   
hi- i never  heard of a mycoplasm until my kid was 5 yrs old in kindergarden and got ill from this viral infection that was going round and round....nothing cured it AX didnt help it etc,,,all kids were sick with it for weeks on end, i caught it from my kid and at aged 35 i was pregnant about 7-8 weeks when it hit me, i took all kinds of meds i had severe sinus infections and was in the er every other week and didnt even know i was preggy until the xray lady asked me if i was and i said no she did a test on me and said yes you are and i was amazed cause i wanted to have another baby and had been trying for 5 years  but it was a surprise, anyways they gave me ( before i knew iwas preggy) ventolin so i could breathe and all kinds of anti-biotics, sadly for me i miscarried b/c of all the meds and ventolin....so yes, i know how bad a mycoplasm can be it is a hybrid a cross between a bacteria and a virus i think......i had susbsequent chest xrays after this infection passed which kleft me with calcifactions scar tissue in my lungs so it was real bad thing to have!!!! that was in 1990
Sarahruth said...
On the contraty. I am new to this forum and just getting started in reading posts and doing resposes. I fully expected to be in a wheel chair about 3 years ago. No answers. Only accidentally found that the solution to such terrible pain was an antibiotic. I took cipro for UTI and all pain disappeared in about 3 days. I thought the success was from Celebrex, which I was given at the same time. Wrong. All pain came back in a month. Six months later I had mycoplasma pneumonia and took cipro again. Sure enough-- all pain went away. My rheumatologist would not give me cipro to stay on. Too dangerous for long term. He gave me minocin (200 mg daily) This is the regiment recommended by the American College of Rheumatologists. It works. There is a very big problem with minocin. It has been around for a very long time, there are many generic brands, it is very cheap, and there is no money to made by the drug companies. For anyone in constant pain, try it. It might take 2 weeks to become effective. You might have nothing to loose but the pain. Apparently the cause is mycoplasmas. I had never even heard of these things. They are very illusive, invasive and cause horrible problems.
After almost 10 years I have my life back. You can do it too!! Keep going till you find your answer. I'll bet I have over 1000 hours on Google searching for answers. I could write a thesis on it. I am here because I have been so active that I have strained my back in some way:)
Good luck, and no you do not have to accept the way you are living.

9-02 crash w/ C-5-6-7 anterior/posterior fusion in neck w/11 screws and 4 metal plates. multilevel HNP at T & L section. FMS, PA in dec 05. on SSDI after 2.5 yr wait. sezuires, CTS, IBS ( C & D). norco, xanax, predisone shots. i dont know what else is wrong with me and neither does anyone else!!!


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/30/2006 4:20 PM (GMT -7)   
all very true. and this is why HealingWell is here...because we all know what it's like.
Dave...you wrote it like a poet. Well said.
Take care,
Erin
PS....I am a big "CURE" fan btw...I wish they would tour again. lol. the Cure has a kickin' box set out...but it's pricey. would make a nice bootleg however. ;)
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 8/31/2006 4:26 AM (GMT -7)   
missie1227 said...
hi- i never  heard of a mycoplasm until my kid was 5 yrs old in kindergarden and got ill from this viral infection that was going round and round....nothing cured it AX didnt help it etc,,,all kids were sick with it for weeks on end, i caught it from my kid and at aged 35 i was pregnant about 7-8 weeks when it hit me, i took all kinds of meds i had severe sinus infections and was in the er every other week and didnt even know i was preggy until the xray lady asked me if i was and i said no she did a test on me and said yes you are and i was amazed cause i wanted to have another baby and had been trying for 5 years  but it was a surprise, anyways they gave me ( before i knew iwas preggy) ventolin so i could breathe and all kinds of anti-biotics, sadly for me i miscarried b/c of all the meds and ventolin....so yes, i know how bad a mycoplasm can be it is a hybrid a cross between a bacteria and a virus i think......i had susbsequent chest xrays after this infection passed which kleft me with calcifactions scar tissue in my lungs so it was real bad thing to have!!!! that was in 1990
Sarahruth said...
On the contraty. I am new to this forum and just getting started in reading posts and doing resposes. I fully expected to be in a wheel chair about 3 years ago. No answers. Only accidentally found that the solution to such terrible pain was an antibiotic. I took cipro for UTI and all pain disappeared in about 3 days. I thought the success was from Celebrex, which I was given at the same time. Wrong. All pain came back in a month. Six months later I had mycoplasma pneumonia and took cipro again. Sure enough-- all pain went away. My rheumatologist would not give me cipro to stay on. Too dangerous for long term. He gave me minocin (200 mg daily) This is the regiment recommended by the American College of Rheumatologists. It works. There is a very big problem with minocin. It has been around for a very long time, there are many generic brands, it is very cheap, and there is no money to made by the drug companies. For anyone in constant pain, try it. It might take 2 weeks to become effective. You might have nothing to loose but the pain. Apparently the cause is mycoplasmas. I had never even heard of these things. They are very illusive, invasive and cause horrible problems.
After almost 10 years I have my life back. You can do it too!! Keep going till you find your answer. I'll bet I have over 1000 hours on Google searching for answers. I could write a thesis on it. I am here because I have been so active that I have strained my back in some way:)
Good luck, and no you do not have to accept the way you are living.

Mycoplasm in line with ureplasm, lactobacilus, fusobacteria, pepstreptococcus prevotella, gardnerella, bacteroides are part of the nature microflora of the female's vulva. Their main concept there is to protect from mycosis (fungus overgrowth). That's why some people experiences mycosis after long term antibiotics treatment, only because the antibiotics kills those friendly bacteria there and allows the fungi to overgrowth. SO like i said before : IT'S ALL about BALANCE.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/31/2006 3:41 PM (GMT -7)   
oooh very cool Marius. I LOVE BUGS! (well...i like bacteriology rather)
yep...all about the homeostasis.
:)
oh, by the way...there's a terrible outbreak of MRSA in the main hospital of my town...scarey stuff! seriously antibiotic resitant strains of staph.
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 9/1/2006 4:08 AM (GMT -7)   
erin kachmar said...
oooh very cool Marius. I LOVE BUGS! (well...i like bacteriology rather)
yep...all about the homeostasis.
:)
oh, by the way...there's a terrible outbreak of MRSA in the main hospital of my town...scarey stuff! seriously antibiotic resitant strains of staph.

Yeah staph and strep are one of the most pathogenic among the common species for humans. And in the hospitals usualy develops antibiotics resistant cultures. For example the hospital aquired bact pneumonias are the most dangerous and sometimes with death outcome, stright because of the antibiotics resistance developed there.
 
Erin, I did read some interesting articles that RA is caused by either ebshein-bar virus, rubeola or parvovirus. The mechanism of AI process provoking depends on the virus. Usualy JRA develops in some children in the way of rubeola allowing the rubeola virus to enter the sinovium and there to
misguide the immune system thinking that the sinovium tissue is chronicaly infected with the virus.
It has been proven that people carring specific HLA DR4-DQ2 haplotype in absence of other PROTECTIVE HLA loci are very likely to get sick of RA after rubeola or ebstein-bar virus infection. The only 100% protective loci identified is DQ1. If a person caries this gene cannot get sick of RA whatever else other suspectible genes carries. Scientists thinks that there are other protective genes, because the picture of the pathogenesis of RA is never enough clear and always are exceptions present. It is beleived that HLA plays the major role for suspectibility to the autoimmune diseases, but because of it's complexity and unique for every human it is very difficult to investigate. Groups of suspectible and protective loci for different diseases are on way to be investigated. It needs broad investigations among healthy and sick individuals with co-investigation for what viruses they cary/carried. WHO suspects carring a specific latent virus as major cause of the AI diseases among people. It has also been proven that the harmless HSV-2 (hepres simplex) may cause CFS in suspectible individuals while majroity people will not even notice it, and this depends on the concrete HLA makeup of the affected individual. Here I am, I carry the risk haplotype HLA DR4-DQ2, had rubeola during childhood but never contracted RA. Two years ago had EBV infectious mononucleosis and two years later my body is still roaming like a fly with no head whether to get sick of RA or not to get sick of RA with mild arthritic aches and fevers, and seems that there is almost nothing I can do to prevent it;((( about you, have you been investigated anything in this direction ?

Post Edited (Marius123) : 9/1/2006 2:36:42 PM (GMT-6)


Sarahruth
New Member


Date Joined Aug 2006
Total Posts : 5
   Posted 9/1/2006 5:27 PM (GMT -7)   
A little about mycoplasmas. They are one fourth the size of bacteria, have no cell wall, and can pass in and out of cells through the cell wall. They can travel freely and cause many diseases in humans. I wonder why they were discovered in 1897 in France and we hear so little about them. Testing is very difficult due to blood handling and expense. It requires a CRP (?) test like HIV that is very expensive. This is an insurance hassel. I was diagnosed by acute antibody levels in the blood after having pneumonia.
There is no clear reason why the tetracycline antibiotics work. It is thought that minocin might block an enzyme.
I think this forum is great and wish I found it a long time ago. I hope this might help someone out there. I know that after 15 years of misery I got my life back and basically pain free. I have been diagnosed for a scoliosis, may have unequal leg length and have spinal problems possible from flat- back syndrome. Now I'm trying to figure out how to correct that. This has showed up since my activity increased so dramatically. I am also blessed with neurofibromatosis.

Sarahruth

Antibiotic Treatment For Arthritis / Using Antibiotics To Treat ArthritisReview: The New Arthritis BreakthroughDoxycycline May Slow Progression Of Osteoarthritis
Related Resources - Antibiotic Treatment


The History Of The Search For Cause And Cure

With no known cure for the more than 100 types of arthritis, treating and coping with the painful symptoms have become the core of concern for patients and physicians.

In the 1930's, a bacterial cause for rheumatoid arthritis was investigated but the research was short-lived except for distinct cases of acute infectious or septic arthritis. In 1939, the first real lead regarding an infectious cause for rheumatoid arthritis arose when mycoplasma, an atypical viral-like bacteria, was isolated from the exudate and tissue of rheumatic patients.Investigators had already shown that mycoplasmas cause arthritis in mice, rats, chickens, goats, and cows.


They had found mycoplasmas in the genitourinary tracts of humans too, especially females.

In 1949 at the International Congress on Rheumatic Diseases the possible relationship between mycoplasmas and joint disease was reported. After obtaining one of the first National Institutes of Health (NIH) research grants in 1950, Thomas McPherson Brown, M.D. and colleagues at the arthritis research unit reported the following year that the rheumatoid disease mechanism was more of an immunologic reaction of antigen and antibody (with mycoplasma as the suspected antigen) rather than the infectious and transmissible type.

In 1955, the research unit reported that mycoplasmas, unlike bacteria and viruses could live in tissue cell cultures without destroying the tissue cells. To further support mycoplasmas as a causative agent/antigen, in 1964 a high incidence of mycoplasma antibodies in the blood of rheumatoid arthritis patients and lupus patients was found, indicating current or previous infection. Also recognized was a 4:1 higher incidence of mycoplasma antibodies in females suggesting a correlation with the higher incidences of rheumatoid arthritis in females.

Antibiotic Therapy

Efforts to demonstrate the effectiveness of tetracycline therapy were initiated and first reported over 40 years ago by Thomas McPherson Brown, M.D. Two weeks after Brown's death in 1989, NIH requested grant applications for the controlled clinical trials of tetracycline therapy for rheumatoid arthritis which he had been seeking. The preliminary results of the clinical trials, known now as MIRA or Minocycline in Rheumatoid Arthritis, were promising and the NIH requested grant applications for studies of mycoplasma and other infectious agents as causes for rheumatoid diseases in 1993, and a pilot study for intravenous antibiotics for rheumatoid arthritis in 1994.

The result of the MIRA clinical trial stated, "Patients who suffer from mild to moderate RA now have the choice of another therapeutic agent. Not only did the antibiotic significantly reduce symptoms, but side effects were minimal and less severe than observed for most other common rheumatoid treatments".

razzle51
Veteran Member


Date Joined Jan 2005
Total Posts : 763
   Posted 9/2/2006 6:59 AM (GMT -7)   
Yes Marus I am with you all the way . Think positive . If I was like the other poster "WELL I WILL BE IN A WHEELCHAIR IN 3YRS " that means you have given up .DONT GIVE UP . Fight it as hard and long as you can . If you are not getting answers go elsewhere. Boy I do . There is a reason for everything. Good post Marius , hats off to you. With my disease you can end up in a whellchair but htis chick aint . Thanks
Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999
 
We are normal people, trying to live normal lives,
with bodies that have forgotten what normal is
 
 
"Remember I'm pullin' for ya, we're all in this together" Red Green


Joan M
Veteran Member


Date Joined Jan 2006
Total Posts : 1973
   Posted 9/2/2006 10:51 AM (GMT -7)   
O I give up on all of you! We are emotionally fluctuating...it is human to sometimes feel hopeless and other times feel rather hopeful. One is not better than the other and most humans are not always balanced. If you have to work on being balanced then that's another job to add to our list of things to do...exercise, lose weight, eat right, rest, have fun, work, etc.

What is wrong with wanting sympathy? All many doctors seem to want is MONEY. If we can not feel free to talk on the boards, where can we? Others might not know what we are talking about.

I do not come to the boards for sympathy but for knowledge. I also use the internet for more information as well as taking books out of the library and using medical reference books.

I consider myself to be strong but my brain is more than a muscle.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/2/2006 11:18 AM (GMT -7)   

Nice stuff Marius.  Just goes to show the promise of genetic therapy for the future.

I've never had any genetic/ DNA labs drawn specific for my RA case...but to relate to your post, my labs have very high levels of the mononucleosis (which many of my docs have named it "chronic mono") and Epstein-Barr Virus titers as well.  This was tested and shown in 2001, 2002 and 2003.  No decrease of any of the levels...so I pay no attention to them really.  I have never labeled myself with Chronic Fatigue Syndrome or Mono.  Rather, I think of CFS  not as a "disease" but a symptom of something greater...just my own little theory.  My old employer for example...he complains of a very bad case CFS, and YES...he has HSV-2 AND HSV-6!!!!  the HSV 6 I thought was a surprising find.  He's also suffered several boughts of mycoplasma pneumonia and "walking pneumonia" ALSO...chicken pox as an adult! That turned into encephalitis!  Interesting isn't it?

Good findings.

Take care,

Erin 


Momf3boyz62
Regular Member


Date Joined Aug 2006
Total Posts : 21
   Posted 9/2/2006 12:07 PM (GMT -7)   

Hey,

I am a fighter, and have been since I was diagnosed in 99 with RA/Feltys Syndrome. I believe everyday I WILL NOT have this disease the rest of my life. My hemotologist told me once as I almost was lunging(sp?) at him in anger of this illness,almost screaming about how I am not living like this the rest of my life, he pointed to his head and said, "its all up here". Think positive, be positive, your cells will know it. I am very careful not to get TOO down or depressed, or even think neg thoughts, tho at times its not the easiest. I came to this forum to find my long lost Erin tongue who has Feltys as I do and share stories, but also to uplift. Thats what the whole world should be doing DAILY! We're all in this craziness together, besides, My Lord has not forgotten me. Thats my where my belief is grounded. I know it.

Cheryl :-)


Diag. with RA/Felty's Syndrome January 99.
Previous meds-Methotrexate,(killed my immune system for 2 years) Enbrel,(didnt work) Humira, Ibuprofen, Arava,(allergic to?) Prednisone, Folic Acid.
Now only on Prednisone because of an allergic reaction they can't figure out, so Im heading to U.of I hospitals and clinics in Sept. for testing, new meds!? Who knows, who cares! Just want off steroids so I can lose weight.


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 9/2/2006 4:32 PM (GMT -7)   
You all buddies,
I know that the spirit is easy-changing having a chronic disease and I know it directly corelates with the health condition in any of the moments in time. Well, the only reason that I know this, is that I also suffer from a chronic condition for 2 years;))
Previously to get sick a was a very stable nature. All the people around me was charging with my assurance. When I got sick everything failed. I became addicted to my diseases and to the internet. Nothing else realy cared me. That was the reason I was left by my GF. My GF thought my disease is just a joke and I have to get used to it as soon as possible with no even a minor irreconcilability, not even a minor self-research on my condition, because for her and for all the healthy people (even for me before to get sick) the doctors always knew what they do, should be their job to get you cured, and all you have to do is just to lay in their hands and listen to them (yes it is true, when it's about flu or other simple disease), but it's not easy to forget what you've been so short time ago (as a healthy), it's not easy to remain indifferent when you see all those proffesors, luminarities of the medicine who says that are not sure what exactly is going on with me. It's not easy to calm down with your newly potentialy life-time bad friend when you see all those doctors just doing their routine check on your condition and telling you the same on any visit. It's not easy when you see that nobody researches, nobody realy wants to find out what had made you from healthy to sick so quickly, seeing in nobody's eyes the desire to prevent your complications or to find you even a cure. It's not a property that the people who do not suffer from chronic illness can realize and understand. My GF was not tolerating my constant tries to figure out what is wrong with me. I don't know whether it's international but here in Bulgaria we have a good saying - "On somebody else's back - even hundred of staffs are not a big deal", it's metaphor you know, but it's very right. Well, it made me very angry and I left her because of this. Then it was impossible to get her back when I finally realized what a big mistake I've done. However, it may have been for good, because I realized *me* as the only stabilizing factor in our relationship and it is not good for future family. You are may be wondering why do I tell you this saga. Well, I think it is related to the subject. It is thousands of times harder to be stable when you suffer from chronic condition, but I think it is not impossible, and the stability does not mean not to do research on your condition or not to pray or hope for cure and to be just resigned. The challenging stability which gives you the full power to compete even with the healthy people is exactly the opposite of the first i.e. to beleive in the cure and to search for it at any moment of your life even in the most lowest and sadest moments.

Erin,
Yes it is interesting that we see again the HHV viruses messed around. I know of 2 my knowns who suffereD with CFS for 6mo to 2yrs. It was not established what the causes were. They are healthy now. The *cure* had came on it's own;)) That means that CFS is not always worsening, I could say even the opposite. Which can say that CFS if only a symptom (like you said), is a symptom of a curable disease;) I made serologic and DNA antigen tissue typing which was requested by my rheumy to help him to clear my case. Since the tissue typing is offten made only for recipient and the donor when doing transplants, here the rheumys sometimes also use it for diagnostic purposes. It does not tell what do you suffer from, but it tells what you *may* suffer from, and what you can't get sick of (even if you stand on your head - if you don't have genes for it) to rule out circuit of other suspected diagnoses in tangled cases like me;) Well when it's about to genes HLA is part of the genes and plays role, but most of the genes causing the diseases are not within the HLA, but somewhere else among the human genome. That's why the HLA itself does not bring enough clear picture now. Other human genome examinations are not yet spreaded for diagnostic and prevention purposes. Only HLA is currently made. Wide genome scan locating the diseases predisposing genes may be very helpfull diagnostic and *mostly preventive* method in the future medicine science. For me is a good point to start from the begining. Genetics are complicated. Well I found an interesting free online book for Immunolgy (http://pathmicro.med.sc.edu/book/immunol-sta.htm) and I am currently reading it.

Post Edited (Marius123) : 9/2/2006 6:32:10 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/3/2006 9:53 AM (GMT -7)   

Hey there all,

And goodmorning!  Ah...that's cute, "My long lost Cheryl!" :-) It is peculiar to run into someone that has RA or Lupus or other AI diseases during the day...2 weeks ago my next door neighbor inquired about my bandages on my knees. I just simply said I had a condition that affects my joints and she said, "Oh get out me too I have RA." Whoa!  5 years living next to her & I never knew it! She takes Enbrel.  So even at times when we feel completely alone...imagine HOW MANY PEOPLE have the SAME EXACT things we deal with. Millions probably.

Marius, thank you for sharing your background & your history refarding your girlfriend.  When I was bedside nursing I always kept in mind how important it is to not only asses the patient, but the interdynamics of the significant other as well.  The family, wife/husband, children...everyone is effected to some degree...not just the patient.  For myself? Dear Lord! I feel so sad sometimes for my dear boyfriend of 3 years...I can imagine that it is 10 times more difficult FOR HIM than it is FOR ME in dealing with my having RA & complications.  I do not know how he does it.  He's so strong & supportive. But he too gets depressed about me sometimes, so at those times I try not to see him and only talk over the phone because it's easier to "fake" feeling good just with my voice! But it's for his own good, I hate to see him sad in any way.  However, if I never became ill...I would never have met him! :-) I was a patient of his!  So as much as disease efffects the afflicted, it impacts the partner just as much if not more.

This turned into a really great thread.  I'm interested in looking @ the site you listed, thank you.

I can reassure you Marius, that here in New York City...some of the worlds best scientest, pathologists, and geneticists are working very hard on autoimmune disease etiology & cures.  One of the best, you can look it up...is the Seligman Center for Arthritis, Rheumatics and Autoimmunity affiliated with NYU Hospital. Many clinical trials are beginning.

We will all get through this. Just remind yourselves each day how much everyone has helped each other even if just here at HW...all the little things add up.

Take care, Godbless,

Erin smurf


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 9/3/2006 11:43 AM (GMT -7)   
Yes there are 165 milions RA sufferers over the world by rough calculations by WHO. So it's not a cause for big supprise about your neighbor's condition. I do not approve that you don't want to see your boyfriend, ,but only talk on the phone. I think also that he should be very concerned about your condition and must want to see you very often, despite your opposing. I don't know how exactly is the situation so I may not be right. I can only suppose. However, of course I do not expect you to share your private life here like I did, since I am still preserving my right to be anonymous and it is much more easy for me to share and I felt partialy reliefed of this.

This what you said about the trials and the research in your area is very good. We here in Bulgaria are not that much "researchable" yet, despite the country have very good traditions in the health care and is leader in the eastern european region health achievements. But seems like the state currently pays more attention on other critical problems such politics: "joining the european union in January", "justice improvements" and other issues which I'm not realy concerned in right now;)) for reasonable causes;) Knowing a foreign languages in combination with the internet gives immeasurable power. So in this connection I have to ask you do you know a good places on the net where a results on various clinical trials are being published, also science articles on the newest studyings made for concrete diseses. Also clinical data for different patients. Yeah, I may guess its a private information, but is there any web site or forum where you can read freely (or by payment) epicrisis for anonymous patients or something like this ?
 
P.S. Poor me, after I red again my own posting I realized what a misarable person I am in this lowest moment of my life, instead of going out and drink and dance, I'm looking to read epicrisis over the net ... what a tragic comedy ..ahah;(
However, I've already decided it.;))

Post Edited (Marius123) : 9/3/2006 1:00:18 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/4/2006 8:24 AM (GMT -7)   
Ah go and have that drink! The only clinical trials that I read are through NYU Hospital for Joint Diseases and Autoimmunity. I am not really good with links and pasting links...don't know how to do it, but if you type a search for Seligman Center for Rheumatics, Arthritis and Autoimmunity...it will prompt you to the clinical trials that have finished and those about to start. A very interesting one is a trial where they are using Lipitor for Lupus patients who are suffering from osteonecrosis.
Take care.

PS...I make for a great partner & am very good to my boyfriend; but I know him very well...he gets too depressed if I'm too ill and can not do much other than be on bedrest, so those times I stay home. Otherwise? We're inseparable! :)
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 9/4/2006 9:25 AM (GMT -7)   
erin kachmar said...
Ah go and have that drink! The only clinical trials that I read are through NYU Hospital for Joint Diseases and Autoimmunity. I am not really good with links and pasting links...don't know how to do it, but if you type a search for Seligman Center for Rheumatics, Arthritis and Autoimmunity...it will prompt you to the clinical trials that have finished and those about to start. A very interesting one is a trial where they are using Lipitor for Lupus patients who are suffering from osteonecrosis.
Take care.

PS...I make for a great partner & am very good to my boyfriend; but I know him very well...he gets too depressed if I'm too ill and can not do much other than be on bedrest, so those times I stay home. Otherwise? We're inseparable! :)

Well, I did not find it by performing this search.
It's good to hear that you have good and stable relationship. Make it even better. Good luck.
 
Thank you erin.

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 9/5/2006 5:26 AM (GMT -7)   

I have avoided reading this thread, and actually just read it this morning.  I guess I do believe the cure is out there, but given my mother's experience I'm not sure it is readily available for me.  I'm with Dave on this one.  I believe more in making the most of my life today, rather than living for the future alone.  Of course I have hope--hope for newer and better treatments, be it traditional or alternative medicine,  but I do not even think of this stuff simply going away.  I've had it for too long now.

With respect to sympathy pleas, I agree with most others on this forum.  I post here because I feel people can better understand here than in my "real-time" world.  I've gained much education and information in this forum, much of which has directed my progress with my rheumatologist.  But even more than that, as Dave so eloquently mentioned, I've had my psychological and spiritual needs addressed here as well.  The psychological and spiritual aspect has a tremendous impact on physical health, and it's something that traditional western medicine does not address.  I consider this forum a support group, and a safe place to vent.  Yes, I feel guilty sometimes venting here, but the only other people I've addressed my fears (regarding AI disease) with have been my husband and my pastor.  I don't really want sympathy; what I personally need is simply to feel like others can understand my situation and that they honestly care.  I try to extend that same understanding and concern to others.  That is the definition of a support group, and everyone needs support at some point in their life.  It is admittedly, difficult to make oneself vulnerable to others, but that's the beauty of an online support group.  It's easier for me to be vulnerable online, rather than in my "real-time" life.  I value everyone's input.  To that end, this forum is a success.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/5/2006 5:43 AM (GMT -7)   

awe, El...that was really beautiful.

 

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