Continuation for "several autoimmune diseases"

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Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 8/26/2006 2:34 PM (GMT -7)   
Hello again.
Thank you for your answers on my previous post. Appreciate it much, because I am in hard situatuion deciding what disease I have, or whether it can be prevented or slowed down since it is in early stage.
 
It's a continuation of my hardships;(
 
Let me remind : I was diagnosed with reactive arthritis before an year ago. It has been going well since, but last 2 months I had flare because of toxic colitis caused by high dose garlic intake which was primary intended to treat my mild arthritis. I do not take any drugs. The garlic as a cause for tha colits was a GI opinion after sigmoidoscopy;)
Well, it is may be true because my colitis or whatever it was/is seemes resolved/remmited now only with vitamin A, diet and probiotics. I eat everything again now;) That's a good experience *not only to remember it*;))
 
My arthritis is again very mild. When I get up in the morning I feel like new. No stiffnes no aches, nothing at all. Later in the day mild tension in the right knee may develop sometimes with little aches. Very occasionaly I get very sharp pain in my right shoulder wich is very inconsistent, lasts for 15 minutes 4 example and happens always when I'm lying in bed watching movie or on the sofa watching TV but never during the night (I don't sleep upright);)) When I move or stand it goes away immediately. The shoulder pain is completely different from my knee pain where when I'm taking rest or sleeping knee always improves. But the pain in the knee is more consistent then the shoulder. I feel the tension in the knee almost all the time, when where I do feel nothing wrong with my shoulder *almost all the time* even if I load it up with physical exercise;)
 
The worst is that I continue developing low-grade fever about 99.5F every afternoon. The fever doesent correlate with the aches in the knee nor with any aches in my body. The eyes are also upset. The fever and the eyes are going to be the biggest problem for me yet;( Eyes: I develop blury vision/tension/easy tiredness/something like a fog vision. Also red blood vessels sometimes protrudes concentrated to the iris, usually on the inner side of the iris, and this is chronic usually at afternoon. I usually feel like new in the morning;( I have the eyes problems almost every day and usually they correlates with the fever and they are also only on the afternoon. The fever subsides later in the evening and returns to my normal degree which is
97.8F.
 
Twice or three times I had severe pain in the eyes or more speciffic behind the eyes accompanied with sever headache. Also ocassinally had mild conjuctivitis - redness of the skin under the eyelid.
 
I also have mild pain im my left kidney, ribs pain below by arms on the back where my kidney is, and some tender spots elsewhere on the ribs which tends to migrate. My GP says it may be because of calcious or infection in the kidney. My urinary bacteria culture was negative month ago. I'm certain it is negative now.
Year ago I was tested negative for RF, ANA and have always had normal blood work and normal CRP and ESR during the ENTIRE course of my disease ;(.....
 
what is going wrong with me?
I am 100% sure that no physician can diagnose me with these symptoms. It has been attempted;( I feel that they are just waiting for development. But what if it can be prevented;(((((((((
I am addressing this message to everyone to answer me whether some / and which of yours or someone else's diseases had started or IS like that?
And what would you do if you were on my place?

Post Edited (Marius123) : 8/26/2006 5:22:02 PM (GMT-6)


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/26/2006 8:41 PM (GMT -7)   
Hey Marius! Welcome back! Have you been to see an Immunologist yet?
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 8/26/2006 11:26 PM (GMT -7)   
Ducky said...
Hey Marius! Welcome back! Have you been to see an Immunologist yet?

Nope,
 
Immunology is not therapeutical subject here.
Rheumatologist or infectious physician must send me to immunologist.
I'll see what can I do.

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/26/2006 11:58 PM (GMT -7)   
Ah, I had seen in your previous posts that you were thinking of seeing an immunologist is why I asked.
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 8/27/2006 4:09 AM (GMT -7)   
Ducky said...
Ah, I had seen in your previous posts that you were thinking of seeing an immunologist is why I asked.

Yes, immunologist consultation is one of the approaches, but it is difficult to find one because they are not practicing physicians, usualy can be found only in specialized hospital sections and are not accepting patients directly. I'v read an official journal that immunologist consultation is even obligatory for all AI diseases, but nobody respects this.
 
I don't know who I have to see. My GP also. I'm confused;((
My GP tells, and another buddy from the forum gave me advice to go to infectious diseases specialist, however GP thinks that is almost completely sure that there I will be returned as healty because of all those blood work results negative for infection(ESR,CRP...etc).
I've already been underestimated by several physicians because of this (1 urologist,1 rheumatologist, 1 parasitic diseases). I have my rheumatologist wanted to put me on methotrexate for several months to slow or turn back the disease course despite it is benign now and no need of that. I refused this because I'm afraid I may suffer from some virus or other infection that the MTX or other immunosupression will only do the things worse. But again I hesitate about this.
That's why I'm looking for as many as I can opinions and advices in the forum. To try to take the proper decision. I am in difficult situation (not yet very painfull), but difficult being afraid not to drop the things out of control or becoming too late for successful treatments.
Anyone have any ideas what is raising up in me? Or any concrete examinations which I have to make/rule out. I've placed more then 'detailed' explaination for my condition.;(
Let me remind I already have made negative: ANA,RF,HIV,syphilis,Micoplasma,hepatitis B,C,tuberculosis,Chlamydia(all),respiratory,GI,urinary tracts bacterial cultures containing no pathogens.
 
 
P.S. And realy sorry for my bad english, I realy hope I do not bore you much with my english.;(

Post Edited (Marius123) : 8/27/2006 5:40:50 AM (GMT-6)


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 8/28/2006 6:14 AM (GMT -7)   
violets said...
Marius,

Hi, I actually saw your post somewhere else and was impressed and got a kick out of it. Also, in your post you just wrote, you put out a request for any info on any disease.  So here I am. I always wonder whether or not I should post to someone. Not everyone is receptive.  But if someone is asking for help, I am going to offer my take.  I hate to see anyone suffer.  I've felt it, I've been there.
 
I just remember I was searching, I sounded just like you, trying everything just like you did with the garlic. I thought I had B12 deficiency and took 5000mg of B12 a day for 5 days and got very sick from it. I tried everything, thought there was no disease, I hadn't checked. But I made one mistake, I believed the tests for lyme were accurate, so I didn't give it a second look. Your asking if any one has ideas of what is raising up in you. Have you checked out lyme?

The fact that you have been to several physicians, just like me with every test negative just like me, says something. I too had a normal ESR, in fact it is like 1, so between the fact I didn't have a fever, all tests negative and a low ESR may doctor asked if I was stressed.

I don't know if you have lyme or not. But, lyme presents in strange ways. I was told I had mono because of my swollen glands, so I delayed searching further waiting for it to heal. Then I thought I had chronic fatique and almost took a viral medication called valtrex. But I was just like you when you didn't want to take the methotrexate, I didn't take the Valtrex. Why, because I wanted to continue to feel my symptoms. I knew something was causing them and I was afraid if I took beta blockers, or pain killers, or viral meds that didn't make sense, then I wouldn't find the real culprit.

I finally figured out what I had. You could have something totally different then lyme, but keep searching and believe in yourself, and you will figure it out. But you may want to give lyme a second look.  Lyme has no borders and really no one knows all the ways you can catch it.  It may not just be ticks.

Arthritis is a common symptom of lyme, so is muscle aches, low temperature, low ESR, muscle aches, flu like feeling etc, exercise intolerance and yes pain in your left upper abdomen (I had that) and rib pain or chest pain that moves around.

The only way I found out I had lyme, was when my doctor had me do a trial course of antibiotics. It hit me the first day like a brick or truck. I had an increase in all my symptoms and then some. It is called a herx.  Not everyone has a herx, but I personally feel that most people know once they take the antibioitcs, whether or not they have hit on the right disease.  If it is bacterial you will either be worst in the beginning, or may just feel better and better every day.  If it is not a bacterial you will probably feel no differ.  Since my orginial reaction, then I have slowly gotten better every day.   I suggest finding a good doctor that you may be able to ask about an antibioitc trial. What is it going to hurt, that is if you think you may have lyme.

 

Thank you violets.
I'm very happy that you finaly has found out the cause of your problems.
What tests did they make you ?

It's a stright on goal shot..this about lyme, but like you said I do not think it is exactly lyme in me;(

The reasons that I think that I do not have lyme are that I haven't been bitten by anything unusual as I remember, I haven't had the EM classical lyme rash, and the most strong characteristic is that I have no neurological symptoms, not even a minor. Like I see the neurological symptoms are with priority in lyme. However, I SHALL DO the test just to ensure. I'll post feedback when it's done. I'm planning to talk about antibiotics approach after testing for lyme and with no metter of it is positive or negative, but after 2 more months and my fever not yet resolved.

I have to say in addition to you, that my health problems all started after kissing my GF's herpeses with a an open wound on my lip (sully stupid;((( ). Immediately after, I had 2 weeks bout of mouth ulcers, high fever and swollen lymphs. Months later I was discovered to have bacterial infection in the prostate (prostatitis), penis rash and then developed transitional rash similar to pityriasis rosea, which has failed to be diagnosed unanimously. And all this happened as a consequence. It is may be just a good concentration of trigger *environmental* factors bringing up to my condition.

I spoke with a friend GI physician yesterday. We spoke about my problems hour and a half.;))) His opinion is that I realy have chronic reactive arthritis/reiter's syndrome which had gone worst last months because of gut dysbacteriosis caused by my garlic strong overdosing. He told me to take probiotics as much as I can. This is what I do, but the condition dosen't get better. Not even a bit. Only the GI issue resolved. Everything else is persistent. Doesen't move even a bit;(( In one word: I was returned back as healthy once again, even was returned by friend of mine;))) Well, I'm getting to worry about my eyes, that I may develop some eyes damage, because of severe problems time to time. He told me to visit ophtamologist to prescripe me steroid drops or somethink like that. This might interest you: I spoke with him about the viruses as a possible cause. He told me that if a virus like CMV,EVB,HHV is causing my problems this is only because of lowered / or disbalanced immune system. He asked me about HIV, I told him - negative. And he also told me that if realy a virus is the cause there is no medecine which can do the things better. Only my immune system is the resposible about that. I told him about your Valtrex issues. His opinion is that this is not effective. He told me that Valtrex and other medications of the group are 1) not fully efffective against viruses 2) only effective when the virus is dominating, spreaded all over the body. The medicament not completely inhibits the virus but may come into help to the immune system in stressfull moments. I also asked him about any examinations which I could make to determine an active virus infection. He told me that only the PCR method is reliable. The common antibody titter tests are 90% non-demonstrative for active not acute but chronic infection. For example the chronic hepatitis C infections is being masured by liver biopsy and DNA scan for the virus, the antibody titer is always elevated and this does not mean anything;(. Well since I do not know PCR tests for various virus definitions near my area to be made I should try a different approach. Violets, what do you know about the effect of Valtrex on the viruses, and which viruses ? I told my friend for my methotrexate test proposal by my rheumy. He told me that a low dose of MTX is the only test that for 4 months may determine with high realibility whether my problems are infectious of clearly immunological. If the first I should experience significant worsening after the medication discontinuation, else I should experience significant improvement or even may be a cure;) That was very hopefull. I liked that how it sounded;) However all these "fairy-tales" are usually called "speculations" by the doctors. The reumatical diseases are well known as with most blurred prognosis.

 

Post Edited (Marius123) : 8/28/2006 9:50:41 AM (GMT-6)


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/4/2006 11:13 PM (GMT -7)   

Ducky, Hi, I'm Judy. I just read that you have psoriatic arthritis. I have it too, along with autoimmune hepatitis, and diabetes ( steriod induced, prednisone) I also noticed that you were on Embrel. I was just put on Humira.  I would like to communicate with you and wondered if there are many on the board that havae PA.

I am very new as you can probably tell. I hope to hear from you.

 

Judy


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/9/2006 10:00 PM (GMT -7)   
Hi Judy,
 
I have PA, autoimmune hepatitis (though it was behaving last labs!), and am told I'm possibly pre-diabetic (liver/joint/health issues = serious weight issues = now what they are calling the metabolic disease, syndrom X, etc....a viscious circle.....) based on glucose readings and better watch it. I was supposed to start Enbrel and haven't yet (long story) but am on Plaquenil and getting good results from it so far (knock on wood.)
 
****
 


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/10/2006 12:32 AM (GMT -7)   
Hi,
I was hoping to catch up with someone on here that had PA & AIH, sorry we had to meet in that way though. I crossed over the pre-diabetes and since, or maybe even before prednisone, I am being treated for diabetes. I was supposed to start on embrel, but with the amount of joint pain I have, the dermatologist recommended the Humira. He said he believes it to work the best in treating both. It has been six weeks since the first injection. I do see some change in the psoriasis. It is drying some, but as I come off the prednisone ( I am tapering down from 40, am now at 25), I have started itching again. I"ll have to work hard with topicals to counteract this and have already started to take anti itch medication. I am having no joint pain, ( fairly sure that is a result of the Humira) but the psoriasis, for me, can be a horror story if not kept under control. So, I will be talking to the dermatologist about all this soon. I want to give the humira a chance to work. I hear it is really good, even though I put myself in a situation of having some serious long term side effects remaining on it.

I'm so glad you wrote. I don't completly understand the metabolic disease syndrom X but will do some research. I will look up plaquenil and check that out. Right now I am itching and am about to tak more atarax. I cannot believe the prednisone could make that much difference with itching. But, after all it's the best inflammation med. out there even though it can be deadly.

Let's start a post so we won't have to go back and forth on this one.

If you are still up, write me back after I start a thread. I'll make a new one for Psoriatic Arthritis.
Glad to have a comrad in this battle.

BE WELL,

Judy
"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."


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