Several autoimmune diseases or what?

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Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 8/4/2006 12:32 PM (GMT -7)   

Hello all. I noticed this forum is quite good.

I need advice what to do, because no a doctor can tell me what's wrong with me and no a doctor can't help me. I was wondering in which disease forum to post because I think I may have serveral of them now. I choosed arthritis because it bothers me mostly.

 

Imagine me before an year and a half - a completely healthy 25 years old man. Before an year and a half I had mononucleosis or something like that. However, the diagnosis had not been 100% confirmed, but doesnt metter. It happened after kissing my new girlfriend's herpeses;) I had 2 weeks bout of high fever mouth ulcers and lymphs swollen. I had never had lips herpeses before that. 3 months later, after I had been cured from that mononucleosis or smt - my penis began to certify a strange rash on its head;)) Rash I had never had before in my life. Still no other symptomps. However I bought Daktacort and applied once a day, because my gf told me it might be a fungus. Daktakort had worked well, but only while using it, it seemed like this rash had become chronic ot smth. Than a month later I got rash on my abdomen, and my left ankle had certified a constant feeling like dislocated;) Ops...another twenty;)). I had not payed too much attention on, and I did not connect with the rash. Month later I developed constant low-grade fever, and one day while walking back home from work I felt strange weakness and pain in my knees that I HAD NEVER BEEN FEELING EVER IN MY LIFE. On the next day I had red eyes. That really scared me. So I had decided to go to a doctor. First my GP sent me to dermatologist. There I had been diagnosed with psoriasis, because of my rash on the abdomen, and this on my penis - also psoriasis. Then my GP sent me to rheumatologist. She asked me if I have realtives with psoriasis or arthritis. My answers were no. No psoriasis, No arthritis of course among the known relatives. However, of course the rheumatologist said it's probably psoriatic arthritis;)) How funny ahh?;) Several examinations shown NORMAL blood, NEGATIVE ANA and NEGATIVE rheumatoid factor, HLA-B27 NEGATIVE (however I made full HLA formula - A-,A2,B37,B40,DR4,DR7,DQ2,DQ3 whatever it means), HIV antibodies - NEGATIVE, chlamydia antibodies - NEGATIVE, Tubercolosis - NEGATIVE. After a month of ruling out other diagnoses the rheaumy send me to make a prostate culture because of my penis rash;) - finally. It had came massive positive for klebsiella pneumonia in the prostate secrete;(. Then I made bone scintigraphy which shown inflamation in my lower back, and right toe. Then my rheumy changed her mind and said it might be reactive arthritis not psoriatic. An antibiotics had got me rid of the bacteria which had stayed at a wrong place - in my prostate. The doctor said it might be because of the mononucleosis - a lowered immune system which allowed the infection do develop there, otherwise it shouldn't. The penis rash had disappeared immediately and never returned. However the pain in my joints had not stoped. At least not immediately. Slowly the low-grade fever disappeared. The red eyes began to fade. One day red, one day only irritation. The only medicine I tried to take was Sulfasalazine. I've stoped it because of very low WBC 2 weeks after. Until today (1 year) I take only vitamines and occasionally some food supplements. My psoriasis or whatever it is (I can't fully trust diagnoses 100%, after this) has always been very minor. One or two little pimples somewhere which starts with itching, then disappears and appears on other place even without treatment, never on elbows or knees. It doesent embarrass me. Joint pain also began to fade but very slow. 1 year later I was able to run about a kilometer at morning in the park. I haven't had eye problems except rarely: "fast disappearing low level irriatation in there". I was on my way to remember what the life of a young actually was. My mother had red an info on the internet about klebsiella pneumonia bacteria and how it causes spondilitis and arthritis in some suspectible individuals but HLA-B27 positive, I'm not.
However she offered me to put scalded garlic twice a day which acts like an natural antibiotic with the optimistic moms hope to get me rid of the pain and everything forever;))). I've listened to her. Month later, I was forced to stop it because of colitis;((((. The colitis did not subside till now - 2 months after i've stoped the garlic. Now I am again running a low grade fever almost all the time 37.3, 37.6 celsius. I have chronic pain in my left abdomen, something like spasms, I feel like I can "feel" my colon inside;(. I have irritated hemmoroides - irritation in my anus and a bit of bleeding too. I've solved the bleeding and the irritation in the anus with anti-hemoroidal candles, but the collitis left. But the worst - my joint pains has returned on theirs original measure with the constant fever ;((( Simple stool examination shown no pathogens. I don't have diarrea nor a a constipation, only pain and gases. I made sigmoidoscopy I was told that I DONT HAVE ulcerative collitis only a mild inflamation in the colon and irritated hemmoroides probably because of the garlic intake (but how can I beleive?). It does not go away 2 months already. And the most amazingly my blood and ESR are ABSOLUTELY NORMAL all the time!!! But what is going on, I generally don't feel well. Thats 'kin 2 months of my life. I can't even think about going out because of constant fever, pain and weakness in my knees, abdomen. Sometimes I don't have any significant pains, but I have fever all the time, it's awfull! I've lost all my friends, I've lost my gf long time ago, because of the disease. I quit job because of the disease. It's the summer;( Some people says me, relax you are such a mild case, assuming that I have never had swelling of joints nor a visible skin disease. But actually I have a bit of everything;((((((( Ops, sorry I've missed the red eyes. They has also returned;( What are these autoimmune diseases, how many of them do I have? Crohn, UC, Psoriasis, Psoriatic arthritis, reactive arthritis, ankylosing spondylitis ??? Tell me what to do ? Anyone else with such a problems?

Post Edited (Marius123) : 8/4/2006 2:26:54 PM (GMT-6)


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 8/4/2006 9:44 PM (GMT -7)   

Hi Marius and welcome.

I'm sorry to hear about your ailments. I'm sure you are confused as well as fed up. Though I haven't had exactly what you are going through, I had some similar experiences: I was hit hard at 25 1/2 years old as well (though I grew up with juvenile rhuematoid arthritis) with debilitating pain. For a couple of years leading up to that point, it was the strangest thing - it was like my body was just searching for a place to attack.  I dealt with infections, sores, roaming joint pain and so forth.

I have since be diagnosed with psoriatic arthritis as well. When I was diagnoses as a child, everyone was baffled as no one (that we knew of) in the family had any form of arthritis. My theory - it is a result of a childhood illness (rubella) that often leaves it's mark w/RA.

The funny thing about psoriatic arthritis is that it is one of those autoimmune diseases that affects more than just your joints. It can make you break out in these painful bugbite/pimple looking things all over the place (they are pre-staph infections, so watch them closely!), your fingernails will look like you were punching them with a blunt pen tip (called pitting), your organs can be affected causing inflammation and infection (I am often hauted by numerous bladder infections), it can cause psorisis outbreaks (obviously), it can cause colitis-type symptoms, and so on.

Swelling, stiffness, warm/red joints.....they are all signs of arthritis, but not always apparent nor at the same time. Nor can you rely on the blood work results.

With all forms of RA, you can have times of remission, flares, and times where you are 'just getting by." Do you have multiple diseases. Possibly. Could all these issues be the result of psoriatic arthritis. I'm guessing, possibly is the answer as well. The azulphidine will help with the colon issues, if you are will to try that again. 

I would stick to keeping in check with doctors and getting the right answers and treatment (this can prove to be a trying task, but when you are getting rashes that are turning in to infections like that you don't want to let them go!) You know how you feel, don't let the doctor's treat you like you are crazy, or dismiss you because blood work has come back normal. That really isn't a fool-proof way to know if you have arthritis or not.

I have to ask - when all those rashes and pain started, you never once went to the doctors?

I'm sure someone w/more medical knowledge will be around shortly to answer you. I just wanted to welcome you and let you know you are not alone out there. I hope you find some relief and answers soon. Hang in there!
***
 


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 8/5/2006 3:07 AM (GMT -7)   

Thanx CaMama. Appreciate your attention and support.
I wish to excuse for my lil-bad english. Actually english is not my mother tongue.

Yes I am realy confused. Since I don't have so severe symptoms (yet), but I have almost all of them. I've read here on this forum about the "mixed connective-tissue disease" and I'm afraid now I may have something like that, but in an early stage (because of my blood and ESR normal). My nails looks quite healthy (by now) no signs of pitting and distortions yet. It is may be the reason that I'm not still official diagnosed only supposed with PA. But I can't imagine my nails to begin to crumble some day;((( My official diagnosis is still only seronegative spondiloarthropaty by now. I've had rubella in my childhood, god-bless It haven't brought me JRA then. I beleive my klebsiella uro-genital infection last year brought me my condition now. Before that I was comletely healthy. Any-one had a same or similar experience ? I beleive everyone's trigger factor is different. That's because all we are different. Currently the doctors throws up their hands in surprise about my condition since it's in early stage, they can't tell me the worst yet. And prescriping me only vitamines and says it will heal on its own. I realy hope so, but in addition I am planning to treat my colitis with probiotics and prebiotics. These are food supplements. The klebsiella bacteria is normaly found in the gut flora and after I developed colits it may be finding a way to enter my bloodstream and may be this is worsening my condition so bad. The probiotics are live bacteria of the "good ones". They inhabites the gut and do not allow the bad bacteria like klebsiella to grow enought to become a pathogen. I beleive that if I fix my gut issues the other issues will improve on their own. I hope. I realy hope. This is my teory partial;))) The doctors says: no immuno-suppression yet. I don't even take NSAIDs. Practically I don't need them for my arthritis, knees are just in little pain and stiffnes, and some back pain sometimes, nothing more yet. Seems like the azulphidine is not a good medicine for me It does almost nothing and I have low WBC naturally. It is always 4.3-4.4 when I'm clear. I think it is genetically low. And when I take azulphidine they falls under 2.5 which is extremly dangerous for infections and cancer I know. When is about to go on immune-supressive therapy I think it will be better if it is something more aggressive for stressed therapy like Metho, or some of the new biologics which does not supress the WBC only some citokines.

When all those rashes and pain had started I went to a doctor, it was my GP. She told me I have fungus on my penis and to continue the daktakort creme and to take vitamines and immuno-stimulators. It seemed that I've been having the klebsiella prostate infection for more then an year left undiagnosed, beacuse of its less symtomatic behaviour;(. I think this might have been the key;( I beleive my immune system had been trying to fight the prostate infection for such a long time without attacking my own organs, but durring that time something has happened. Some trigger has pulled down and it has started as mild arthritis and psoriasis-like rash, beacuse I obviously DO HAVE my genetic predisposition to both diseases, otherwise it should not happen;(((.

Do you have skin psoriasis? How severe is it?
How old are you? do you have children?
I am suffering so bad by the thought that I will never have a good wife and children because of my disease, I'm so young;( It is havy unfair.

Thax for your support.

Post Edited (Marius123) : 8/5/2006 1:21:08 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/7/2006 9:15 AM (GMT -7)   
Dear Marius,
Welcome to HealingWell. Wow, so sorry to hear what you are going through!
My initial thoughts were perhaps syphilis. Did they test you for that?
My second thought was yes, a reactive arthritis also known as REITER'S SYNDROME. Any bacteria left untreated or left to go haywire in a suppressed immune system will land a person with arthritis. Also, an infection left untreated can trigger an AI disease such as RA. Antibiotics and the infection itself can cause colitis and if an AI process was triggered, an intestinal inflammation process can occur as well such as Crohns. And RA and Crohns go often hand in hand.
However, the treatment for mostl AI diseases are the same. But we need to be sure the bacterial ingection is completely gone. Have you seen an Infectious Disease doctor? That and a rheumatologist would be a good combo to have right now.
I feel for you! I'm 25 as well. Feels like you've been robbed right?
Sincerely,
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 8/7/2006 12:13 PM (GMT -7)   
erin kachmar said...
Dear Marius,
Welcome to HealingWell. Wow, so sorry to hear what you are going through!
My initial thoughts were perhaps syphilis. Did they test you for that?
My second thought was yes, a reactive arthritis also known as REITER'S SYNDROME. Any bacteria left untreated or left to go haywire in a suppressed immune system will land a person with arthritis. Also, an infection left untreated can trigger an AI disease such as RA. Antibiotics and the infection itself can cause colitis and if an AI process was triggered, an intestinal inflammation process can occur as well such as Crohns. And RA and Crohns go often hand in hand.
However, the treatment for mostl AI diseases are the same. But we need to be sure the bacterial ingection is completely gone. Have you seen an Infectious Disease doctor? That and a rheumatologist would be a good combo to have right now.
I feel for you! I'm 25 as well. Feels like you've been robbed right?
Sincerely,
Erin

Helo Erin,
Thank you for your comments and ideias.
I was in thinking to visit an immunologist soon, but haven't tought about infections disseases physician. Thank you for this great idea.
Yes it may have been reiter's syndrome, but offten the reiter's syndrome passes to more severe and more chronic disseases after the intial onset;(( Very few are those fully cured from reiter's syndrome. Here I am. I was having only conjuctivitis before. Now I have occasionally pain and light-sensitivity in the eyes in addition. I was having only knee, toe and lower back pains. Now I have shoulder, wrist, neck pain and ribs pain in addition sometimes.
I have done 3 control examinations on uretral and prostate secrete for the klebsiella pathogen again after the intial course and antibiotic treatment last year. It has came negative all of them 3. Now it appears the infection there has been resolved. At least there - for sure. Like I told it is normal the klebsiella species to be found in the gut (in stool), for a healthy person it should not be a pathogen there (and it is not). But for me, seems like it may have happened a pathogen. That may raises me colitis now. Supersensitivity to that bacteria in the gut. Yes you are right the AI disseases are close each other and may be related. Doctors says the bacteria,viruses are the main cause of the AI disseases. Let it call "tollerance brake-down" up to certain viruses and bacteria ussualy living in our body from milions of years, and we must live with them in symbiosis, and they need us to live also. Typical example for this body disbalance is Crohn dissease. Multiple trials have shown good results for the threatment of Crohn with antibiotics. But alas it can't be cure since these species are un-eradicatable because of the ancient genetic symbiosis with them. I don't want to have this dissease please dear god! I'll do best! I'll do only good things for everybody. It's called : bargain with god;)). But actually I may have this dissease;(( Time will show.
I want to ask you a question. I red in your signature, that you have had Lymes dissease for 10 years. I haven't done test for Lyme yet. I've done for syphilis-negative, but for Lyme not. I have to ask you: had your Lymes dissease been undiagnosed for all these years ? In case of "yes", then why ?
Srry for my bad grammar, I'm not sure about this word sequence. Laugh ;)))
 
 
P.s.
Sorry I'm some internet information philosopher (as you see). Hope you don't hate me about that.
I've mistaken my proffesion. Medicine is very interesting subject to me and I'm happy when I have sb to talk about my theories and thoughts even to argue me.

Post Edited (Marius123) : 8/7/2006 2:04:36 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/8/2006 9:19 AM (GMT -7)   

dear Marius,

everything you said makes total sense & i as well love to breakdown the theories and etiologies of disease.  it is fascinating.

i contracted Lymes in 1995 (through extensive DNA analyses & bloodwork). that's how in 2002 they were able to tell me how many times the spirochete had mutated, it's age, and to what extent it was antibiotic resistant.  it wasn't until October 2001 that my doctors had pinpointed the Lymes bacteria. 

i was in Pennsylvania on a camping trip in grammer school in 1995; 3 days into it i had a fever, didn't feel well, was blotchy, and my knees ached.  this continued for quite a few months.  from 1995 to 2001 i had progressively worse joint pain, seizures, fevers....and it wasn't until by chance, an emergency abdominal surgery i had, i wasn't recovering right & my PCP ran EVERY blood test there was.  Lymes detected through ELISA and western blot.  all those years i had weird bloodwork but they all shrugged it off. 

the untreated Lyme bacteria however, left untreated all that time caused extensive complications and AI diseases.

got treatment in 2002 throughout Jan.2004 and Lymes was gone.  the Lyme Disease was a picninc compared to RA.

take good care of yourself marius,

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 8/8/2006 11:25 AM (GMT -7)   
erin kachmar said...

dear Marius,

everything you said makes total sense & i as well love to breakdown the theories and etiologies of disease.  it is fascinating.

i contracted Lymes in 1995 (through extensive DNA analyses & bloodwork). that's how in 2002 they were able to tell me how many times the spirochete had mutated, it's age, and to what extent it was antibiotic resistant.  it wasn't until October 2001 that my doctors had pinpointed the Lymes bacteria. 

i was in Pennsylvania on a camping trip in grammer school in 1995; 3 days into it i had a fever, didn't feel well, was blotchy, and my knees ached.  this continued for quite a few months.  from 1995 to 2001 i had progressively worse joint pain, seizures, fevers....and it wasn't until by chance, an emergency abdominal surgery i had, i wasn't recovering right & my PCP ran EVERY blood test there was.  Lymes detected through ELISA and western blot.  all those years i had weird bloodwork but they all shrugged it off. 

the untreated Lyme bacteria however, left untreated all that time caused extensive complications and AI diseases.

got treatment in 2002 throughout Jan.2004 and Lymes was gone.  the Lyme Disease was a picninc compared to RA.

take good care of yourself marius,

erin


Dear Erin,

 

I sounds very frightfully.

I have read several articles about the lymes disease.
I know the lymes arthritis is also with autoimmune origin. But it is quite bravely to say that averybody has genetic predisposition to arthritis because almost everybody contaminated with lymes will develop some sort of arthritis or at least arthralgia in some stage of their illnes. Actually some autoimmune processes are self-limiting and returnable. A wide proof example is the drug-induced lupus, wich cures fully after the drug termination.

But have you seen these rashes (http://www.canlyme.com/rash.html) They are very tipical for Lymes disease. Have you ever had them?

What was your health status before you catched the lymes?

How it has changed after?

Did you have a tick bite immediately before the mentioned symptoms in 1995?

Do you know if you are HLA B27 or DR4 positive ?

Do you know if lymes disease can be passed from human to human. And how?

Post Edited (Marius123) : 8/8/2006 1:06:32 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/8/2006 12:23 PM (GMT -7)   
the arthritis from the Lymes was immensely helped with antibiotics.  and of course, any infection of bacterial sorts will end up in an arthritic condition.
it's sad, that the RA and autoimmune condition i have are basically all sequala of the Lymes.
 
my health BEFORE all that?  oh my gosh!!!!! i was wonder woman!  weighed 145lbs, ran track, benched pressed more than the boys! worked 2 jobs, went to school....even juggled 3 jobs at one time!
only thing health wise was frequent strep throats.
from 1995 to 2000 i was still doing "fine".  i did have knee pain, passing out, seizure activity, and back pain.  i was told time & again that i was FINE and NORMAL and nothing was wrong...so i belived them because i was a kid, and i could still do everything i wanted to do.
my blood work in the meantime from 1998 to 2000 showed elevated WBC's, crazy IgGs IgMs...and positive RF and on 2 occassions i had an elevated ANA. then againa...i was a teenager, so i didn't care as long as i could work, go to school, work out, etc...
in August 2001 i started to go slowly downhill. Sept. 2003 through winter 2004 there was a time where i couldn't walk! so i was really disabled, had to quit college several times. got a little better when i went on TNF meds. May of 2005 was when i had to stop work.  have been very ill since with the RA.
 
i never saw a tick bite, although i had a hard bump on my head about the size of a pencil eraser. (which i picked off i think...i was 13, so smart?  not so much) 
 
never been tested for the tests you mentioned; although through objective diagnostics i have Ankylosing Spondylitis.
 
i had asked the neurologist about human to human contagiousness of Lymes.  her answer was to wear condoms if you have sex and do NOT donate blood.  so there ya have it!  maybe researchers & DRs still do not know?
 
what type of work to you do Marius?  you mentioned a little about it...but are you in the research field?
take care.
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 8/8/2006 1:58 PM (GMT -7)   
erin kachmar said...
the arthritis from the Lymes was immensely helped with antibiotics.  and of course, any infection of bacterial sorts will end up in an arthritic condition.
it's sad, that the RA and autoimmune condition i have are basically all sequala of the Lymes.
 
my health BEFORE all that?  oh my gosh!!!!! i was wonder woman!  weighed 145lbs, ran track, benched pressed more than the boys! worked 2 jobs, went to school....even juggled 3 jobs at one time!
only thing health wise was frequent strep throats.
from 1995 to 2000 i was still doing "fine".  i did have knee pain, passing out, seizure activity, and back pain.  i was told time & again that i was FINE and NORMAL and nothing was wrong...so i belived them because i was a kid, and i could still do everything i wanted to do.
my blood work in the meantime from 1998 to 2000 showed elevated WBC's, crazy IgGs IgMs...and positive RF and on 2 occassions i had an elevated ANA. then againa...i was a teenager, so i didn't care as long as i could work, go to school, work out, etc...
in August 2001 i started to go slowly downhill. Sept. 2003 through winter 2004 there was a time where i couldn't walk! so i was really disabled, had to quit college several times. got a little better when i went on TNF meds. May of 2005 was when i had to stop work.  have been very ill since with the RA.
 
i never saw a tick bite, although i had a hard bump on my head about the size of a pencil eraser. (which i picked off i think...i was 13, so smart?  not so much) 
 
never been tested for the tests you mentioned; although through objective diagnostics i have Ankylosing Spondylitis.
 
i had asked the neurologist about human to human contagiousness of Lymes.  her answer was to wear condoms if you have sex and do NOT donate blood.  so there ya have it!  maybe researchers & DRs still do not know?
 
what type of work to you do Marius?  you mentioned a little about it...but are you in the research field?
take care.
erin

 
 
Did you mean that you were completely healty before the lymes, and the lymes brought you all this?
Oh my god!
 
I am a software developer. Working (worked) at one of the most good IT companies in Sofia. But I quit recently. Actuallty I am from Bulgaria. Salute from here. Here the weather is warm, most of the people went on vocation on the black sea coast, now tanning their asses. Now I am all alone without friends watching movies, doing some small work on one or two freelance projects at home and researching the internet for my disease, whatever it is. Like I said I think I've misaken my proffesion. I should be some medical man now. The medicine is a subject of interest for me.
So... I'm not researcher, at least not a proffesional one.
 
Look, now I am interested on the difference between auto-immune reaction and immuno-pathogen reaction. Seems like there are many diseases that are causing symtoms similar to those in autoimmune diseases (ex. lymes, syphilis, hiv), and are also partly immune system caused (trying to fight the invader). But they call them immuno-pathogen symtoms not auto-immune symptoms (when they know the invader). The most simple and common immuno-pathogen symptom is the fever, but there might be also conjuctivitis, arthritis, some nerve system inflamation and etc (just like the auto-immune). And what is the "thin red line" between those two characteristics. How the doctors determines them. How can I be sure that I don't have some infection left untreated, especially with this constant fever I have now. But when you look it from the other side: Imagine you are physician challenged to find what possible infection can cause anybody's symptoms. First remember the medicine course. Then if it's still not clear I would try every known possible test. But they all will come back negative. Some of them false-positive. I would prescripe some antibiotics for a week or two. And when the things still remains unsolved I will stop digging and will express a standpoint - "This is an auto-immune disease". When I search the net for all these symtoms all these complains (in forums, articles) all I see is that the autoimmune diseses symtoms looks very similar to many immuno-pathogen symtoms. Now - look behind, in the past, when the Lymes hasen't been discovered yet. Actually the lymes isn't good example because it has very obvious initiation - a thick bite, but there are others, not so obvious - ex. the hiv virus. Then how can we be sure that now, there is no something which has not been yet discovered too?

Post Edited (Marius123) : 8/8/2006 3:12:02 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/9/2006 9:41 AM (GMT -7)   

marius, this is great theorizing!  you just might have a second career ahead of you. :-)

here's one of my "thinkings" on AI diseases.  Auto-Immune= too much immunity.  Auto-Immune= the "self" being perceived as foreign.  i feel this process is as if the body is eating itself from the inside out.  and in basic kindergarten thinking, that's exactly what is happenning. 

every MD i  speak with is still baffled as to "How and why does the body start to atack itself?"  what is it that activates this response?  of course we know the whole basics of the process & that's understood...but i think it's a long time coming until this is completely understood...and until then, we're forced to rum the gammet of immunosupressants.

you mentioned HIV.  right now, my particular state of RA and Crohns & related AI Diseases...it has put my body in an "AIDS" like position.  whereas HIV develops into AIDS & destrpys the immune system, AI patients are given a slew of immuno-modulators to kinda "wipe-out" the immune system.  so i'm left with white blood cell counts that are very very low, susceptable to opportunistic infections, develop super-infections like oral thrush & pneumonias, the T-cells and platelets deplete, swollen lymph nodes, fevers, etc...   so the treatment is to deplete the immune system and make it deficient.   one would figure that the opposite would work for HIV and AIDS...giving them the immune, the too much immune that AI patients have.  i wonder if researchers will ever look at that closely with DNA and all...i bet the processes are so similar.

i mean, you are right in saying that a virus or bacteria can mediate an autoimmune disease...and a virus does cause HIV.  hah!....it never ends eh?!  you can go on and on forever. 

with my nursing degree, i do wish to pursue research at a PhD level. {gonna take a LONG time!}  i would like to specialize in rheumatics & infectious disease.

to get back to your question, yes...as far as i know i was in complete health before 1995, before the Lymes.  and from what the CDC did with the Lymes biopsies of mine & from what all my Dr.s say....all of these AI Diseases were caused from the untreated bacteria (about 10 years untreated).

it really is a fascinating & exciting field.

good corresponding with you!

erin


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 8/9/2006 10:07 AM (GMT -7)   

Very interesting discourse, you two!  Erin, I have had more than one doctor (not rheumy, though) tell me they believed that AI disease is triggered by bacteria, lending credibility to the entire antiobiotic protocol.  ONe doctor explained to me, however, that  once the antiobiotics treat the bacteria, they have no more use.  The bacteria has already triggered the AI reaction and once it's triggered it's very difficult to get it back under control.  You can eradicate the bacteria, but you still have the AI problem.  This is why I've never completely bought the AP.  Simplistic?  Sure, I'm no medical doctor.  But this always made sense to me. 

I'm sure you will get your Ph.D. one day.  And Marius, ERin's right--it sounds like you already have a second career on the way.

 

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


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 8/9/2006 4:18 PM (GMT -7)   

Yeah a nice conversation forms here.

 

Dear Erin,
I would like to argue a bit with you.

<quote>
here's one of my "thinkings" on AI diseases.  Auto-Immune= too much immunity.  Auto-Immune= the "self" being perceived as foreign.  i feel this process is as if the body is eating itself from the inside out.  and in basic kindergarten thinking, that's exactly what is happenning.
</quote>

Yes I prone to agree but the immunologic process isn't that much simple.
I've read a several articles and medicine lectures about the basics of the body immune response against invaders. Here is the most highest level one from a medicine course for immunology: http://www.agroborsa.com/Immunoregulatory_and_tolerance.doc It is quite dufficult for understanding, but I was prepared for that with reading some more simple and basic explaination of how the immune system works. However in this document is written the concept of the mechanisms which protects our body from "self-immunity" The immune system of the vertebrals is very complicated one and if some "very little" disbalance apear - "very bad" things may happen. The lymphocytes are part of the leukocytes which are WBC. They are being produced by the marrow of the spine from stem cells. Then they goes into the thymus gland for training. There are antigens of all our body organs expressed in the thymus. There the lymphocytes (B and T cells) undergoes positive and negative selection. This is not explained very well in the lecture. The negative selection deletes (kills) those lymphocyte cells that reacts too strongly with self-antigens (not only "reacts", but reacts "too-strongly"). That means that those that reacts normal against "self", doesent undergo deletion. The positive selection deletes those lymphocytes which reacts too "week" against "self" antigens. That means that these lymphocytes are also unusable against any invader, so they are being deleted. So as a result we receive lymphocytes that goes into the blood stream wich are able to detect milions of different invaders's proteins (even non-existing in the nature ones), but even including "our-self", but not too-strong (because of the negative selection). If there are already maturated and already in our bloodstream B and T cells which are still able to react strongly against "self" -the spleen and the follicle, they are able and are responsible to delete these B and T cells. So imagine the B and the T cells are our fighters. But the body has another fighters that can fight even them if it is needed. I think this threshold actually does not allow a rising of a "self feeding up" autoimmune reaction. That is how when an autoimmune reaction happens it is most of the times - reversible. And it is proven that an autimmune reactions happens quite often in anybody (especially when the immunity is stressed by some pathogen), but these reactions are being well controled in the healthy balanced immune system and goes not to impress us and the doctors too much. This is how it has to be. There is another important threshold which makes us feel well "to the highest degree" when we are not sick. This is the lymphocytes "anegry". In the lecture is written very complicated. So I will try to explain it more simple in the way that I understand it. By nature the immune responce is arranged to be self-limiting process. That will say: the lymphocytes are arranged to become more insensible by the time they are producing imflamation or stimulated. So they are all competing to stop their response by the time. And when it finally happens the lymphocyte becomes fully anergized (unable to be activated by the same antigen). Similar is the process which induces so-needed anergy against "self". The first tussue that the lymphocyte meets when enters the bloodstreem is "ours" and it is stimulating it to activate. But not stimulating it enough strong. So by the time this lymphocyte becomes fully anergized against "ours", so as a consequence it does react to "self" even not a bit anymore. So this is the reason when we are healthy - we feel healthy and our immune system doesn't couse any inflamation at all, although primary the cells went out of the thymus are able to react normally against "self" (but not-strong, only normally, but this should be enough for the anergy against self, may be this is the key, who knows...). There are one type helper T cells which are suppressive cells. Their role and development is not still very clear, but their task is to recognise only the "self-antigen" and to release immuno-suppresive cytokines when it meets "our-selfs", that means the opposite of all others Lymphocytes. It is beleived that there may be more factors that protects the body from auto-immunity, but not yet discovered. So as we see, everything realy seems to be about balance. It's just a perfect balance. Which (I think) is generaly managable. But not yet obviously.

 

Dear elcamino,

<quote>
ONe doctor explained to me, however, that  once the antiobiotics treat the bacteria, they have no more use
</quote>

The antibiotics doeset work on the viruses. Also the anti-viral treatments developed recently are not that much effective like the antibioics are against bacteria (they can't eradicate it). What I mentioned last posting is that the cause may has not been yet discovered is more related to the viruses. Yes I think it is possible an unknown virus to cause the problem, of course not for all AI diseases, but at least for some - this is one of my thoughts. The other tought is about the natural flora which lives in us in symbiosis. For some way, some genetic make-up, or circumstance may bring a hypersensibility against one or more of the "ours bacteria" that usualy lives in us. We need to manage a well balanced tolerance against this bacteria a tolerance which is generaly weeker then to "us-own tissue", but enought to "not mount" a constant immune response against it (but to mount only when it grow too much, or grow in a wrong body place). Remember the lymphotic anergy - above. And something more: how do you think the evolution has allowed this tolerance against these symbiotic species which lives in us? My only toughts are the "teory about the molecular mimicry", i.e the species have evoluated to be more similar to our tissue proteins in order to survive in us (so they are partly part of us), and that may brakes-down "against-self" tolerance also, when we mount a proper powerful immune response against them we are mounting partly against us also. I am still having deep doubts about that some AI diseases are constatly feeded up by the immune system itself alone. And if it is by theory possible (but practically impossible) to eradicate the bacteria - the disease would cure. It is well proven some people RA is caused by the Proteus species found in their gut. Similar is to AS and the klebsiella pneumonia (may be my case). Many many people don't know about their exact reason and time when they had become hypersensible against some bacteria, but I am positive about this is the reason even for them. Normal bacteria can be found in the gut, in the stomach, in the vulva (AI m/f ratio 1:3), in the mouth, in the eyes and on many more unbelievable body places. It usually should not cause us to be sick. You will say: "it's simple, the immune system sensibility si just more blunted in those places where the body needs the "good" bacteria"". Nooo... it is not true. Everybody knows what happens when we acquire salmonella through food. A diarrhia, fever - which is exactly the immune system which is trying to get rid immediately of these 100% non-symbiotic bacteria. My theory is that the immune system is enough sensible everywhere, but it just recognizes the "good" from "not-good" bacteria through the mecanisms of the "molecular mimicry", but exactly this is causing many AI diseases on the suspectible persons when a "good" bacteria becomes a pathogen, and we mount enough powerfull immune response to it. You will also say: "ohh that's easy, we can eradicate this particular type of "good" bacateria which is causing our symptoms"". Nooo.. this is not true. If we are able to eradicate it it somehow, it will grow again on its own because it is geneticaly prone to live in us. Also the strength that the antibiotics works against particular bacteria depends on 1) where it lives (that's why some people more likely to affect by the AP then other)  2) The natural antibiotic resistance for the particular bacteria, which in addition increases with more antibiotics taken.

 

Hope you had much fun with that mine stupid english;)

Post Edited (Marius123) : 8/9/2006 5:27:59 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/9/2006 6:31 PM (GMT -7)   

Hey Marius,

That was great.  Not too often I can banter back & forth about immunology with people beside my old professors!

I love how you brought up molecular-mimicracy. {For those having trouble following, molecular-mimacracy in immunology occurs when self-antigens (an antigen is a marker on a cell surface identifying it as either "self" or "non-self"; antigens on the body's own cells are autoantigens....antigens on all other cells are called foreign antigens)  So self antigens are damaged & link with other foreign antigens, the structure of that self antigen then becomes similar and "mistaken" for a foreign antigen....VIOLA molecular mimicracy!  Groovy eh? hah.

I liked your explanation of the processes. The best explanation was when a Microbiology professor explained the immune processes in terms of STAR WARS, using Jedi Knights and such.

So many don't realize the role the thymus gland plays too!  It's forgotten in the midst of things.

The super infections are a shame, in AIDS and the immunosupressed.  Our normal e-coli, staph, and flora on our skin & mucus membranes that "normally live healthfully" causing no problems wreck havoc on the imunocompromised.

So this thread should be IMMUNOLOGY 101.  :-)  

Hey thanks El!  Hah...my PhD is a long ways a comin'...slowly but surely. Any philanthropists out there???? lol.

take care all.

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.


paramedman
New Member


Date Joined Oct 2007
Total Posts : 14
   Posted 12/3/2007 10:19 PM (GMT -7)   
does reactive arthritis only affect the immunosuppressed?
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