Who beleives in the cure?

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 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!

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

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

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.

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 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)

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

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 

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)

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 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.

awe, El...that was really beautiful.