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Old 10-27-2008, 06:34 AM   #1
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Question High ASO Titer...rheumatic fever...need help DESPERATELY

For the last several months I have felt horrible. I have had trouble walking (I've actually had to have my husband assist me in walking around a lot), I fall often when I try walking on my own, and I'm so fatigued I am unable to get out of bed most days.

I have had severe joint pain, primarily in my knees and wrists. My joints feel very stiff and so painful it reduces me to tears. I went to the doctor for this problem in June and was told it was probably lupus or rheumatoid arthritis. However, she did not order any blood work and told me to come back if the pain persisted.

By August, my joint pain was even worse and my joints were very swollen. I went back to my doctor a few weeks ago for blood work. A few days after my blood work she called and told me it looked like I had rheumatic fever. My ASO levels were four times the amount they should have been, and several other levels were off (although I wasn't told what levels).

I was given two shots of penicillin and had several tests done. The doctor was concerned about my heart...my resting pulse rate was over 133 (no anxiety, either).

A few days after this, the doctor called and told me I did not actually have strep like she originally thought. She set me up with a rheumatologist and was not planning on doing any more investigating into my high ASO levels.

As you can imagine, I am VERY confused. I don't know what's going on. I thought that rheumatic fever had to be closely monitored, and you usually need to get more doses of penicillin after the initial infection as it recurs often? If it wasn't strep leading to rheumatic fever then what caused my ASO levels to be so high when the test is strictly for strep?

The last few days I have had a very sore throat (no exposure to any illnesses at all in the last several days) and I'm a little concerned.


If anyone could give me any insight at all as to what might be going on and what the problem may be I would greatly appreciate it. I'm confused, sick, tired, and I hate living this way at only 20 years of age. I have no social life and cannot work anymore. I feel like I'm falling apart and it's so depressing.

 
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Old 10-28-2008, 08:41 PM   #2
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

Can you tell me what ASO levels are? I have taken many tests and I don't recall an ASO test. What does it stand for?

 
Old 10-29-2008, 05:36 AM   #3
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

It stands for Antistreptolysin O, and it tests to see if you've had a prior infection by Group A strep. by measuring those particular antibodies, which are produced/elevated if you have. High results can point towards some illnesses in particular, including rheumatic and scarlet fevers.

Hope that helps

 
Old 10-29-2008, 12:23 PM   #4
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

Rhematic fever is one of four immunologic phenomena which can potentially follow infection with Group A Streptococcus (also known as Streptococcus pyogenes).

It is very important to note (which I think your family doctor did not) is that rheumatic fever is NOT from infection with the GAS bacteria themselves but from an immunologic process which follows.

So, your body gets infected with GAS and eventually fights it off; however, in people who are at risk for the immunologic consequences, the immune system ends up making a whole bunch of antibodies days to a few weeks after the initial infection is gone. It just so happens that some of these antibodies like to attack one's heart valves and can damage them, and you can also get these antibodies attack the joints to give severe joint swelling, stiffness and pain.

Rheumatic fever is the syndrome FOLLOWING a GAS infection which can have any of the following characteristics

1. Evidence of a previous GAS infection PLUS any of the following major criteria

Subcutaneous nodules
Pancarditis (i..e inflammation of the heart and heart valves)
Arthritis (joint pain/stiffness/inflammation)
Chorea (snake-like involuntary movements of the arms as a result of inflammation of the movement part of the brain)
Erythema marginatum (a characteristic rash that can appear on the thighs, buttocks).

Plus some of the minor criteria:

Fever
Arthralgia (joint pain, stiffness)
Increased inflammatory markers in the blood
Previous rheumatic fever

Not everyone gets every symptom, and it sound like in your case, most of the symptoms you got were joint related. If your symptoms had been going on for weeks, it's possible that your ASO titre might have already gone back to normal (i.e. it WAS positive, but now is no longer).

In any case, to treat rheumatic fever, you need to use high dose NSAID medications (which are anti-inflammatories very similar to aspirin) or else prednisone in very serious cases.

 
Old 12-09-2008, 12:48 AM   #5
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

Sorry for the long delay in response....I have been too ill to come to this board.


A few weeks ago I had my ASO titer rechecked. It is now even higher than before, even after having penicillin injections.


I have an appointment with a Rheumatologist to try and confirm the diagnosis for Rheumatic fever, even though my doctor said she is sure that's what it is because I have many of the symptoms.

My doctor did not give me any more penicillin but wants to see me again. I'm so frustrated. My appointment with the Rheumatologist is a month away and I'm in agony. My joint pain and chest pain are keeping me from functioning. I don't know what's going on and I need help! If Rheumatic fever is not what is going on, then why is my ASO titer continuing to rise more than a month after getting penicillin? I know the ASO can remain high for quite some time after the infection, but I've had persistent symptoms for months.

I am about to just give up.

 
Old 12-09-2008, 12:22 PM   #6
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

Are you on prednisone?

 
Old 12-11-2008, 12:07 PM   #7
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

No, I'm not on anything now. I'm feeling much worse and have horrible throat and ear pain. I've been running a consistent fever of 99.5-102.5 for two weeks now. My doctor has done nothing to help, even after I went to see her about the fever and pain. The penicillin has not helped the strep infection, so what's going to happen to me? I feel like this infection is literally killing me.

 
Old 12-11-2008, 05:06 PM   #8
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

Well that's the thing--you probably don't have the infection anymore. It's the immune response post infection so no one has used the term rheumatic fever to describe your illness?

 
Old 12-12-2008, 01:47 PM   #9
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

My doctor said she is sure that I have Rheumatic fever but she is sending me to a Rheumatologist for confirmation. She gave me another antibiotic to take when I saw her yesterday for throat and ear pain, as well as fever. I hate taking antibiotics (I always feel so sick while I take them), especially if I don't need them. If the infection is gone then why should I even take them? I'm supposed to take them for two weeks. I don't see why it is necessary. She also ordered a lot of blood work, including checking for lyme antibodies. I don't really understand what she is doing.

If the infection is gone, then should my ASO titer continue to increase dramatically well over a month after treatment?

 
Old 12-14-2008, 02:12 PM   #10
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

Well the antibiotic in your case is preventative. Your immune system has demonstrated an overzealous reaction to group A streptococcus so the antibiotics will prevent future infection. Yes the ASO titres can rise after the infection is gone for the very reason you have rheumatic fever. ie your immune system is churning out lots and lots of anti-streptococcal antibodies.

 
Old 10-09-2009, 04:21 PM   #11
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

Not sure if you ever found out what happend. If it wasn't Rheumatic fever could it be Stills desease?

 
Old 02-28-2010, 03:47 AM   #12
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

Quote:
Originally Posted by Victoria05 View Post
For the last several months I have felt horrible. I have had trouble walking (I've actually had to have my husband assist me in walking around a lot), I fall often when I try walking on my own, and I'm so fatigued I am unable to get out of bed most days.

I have had severe joint pain, primarily in my knees and wrists. My joints feel very stiff and so painful it reduces me to tears. I went to the doctor for this problem in June and was told it was probably lupus or rheumatoid arthritis. However, she did not order any blood work and told me to come back if the pain persisted.

By August, my joint pain was even worse and my joints were very swollen. I went back to my doctor a few weeks ago for blood work. A few days after my blood work she called and told me it looked like I had rheumatic fever. My ASO levels were four times the amount they should have been, and several other levels were off (although I wasn't told what levels).

I was given two shots of penicillin and had several tests done. The doctor was concerned about my heart...my resting pulse rate was over 133 (no anxiety, either).

A few days after this, the doctor called and told me I did not actually have strep like she originally thought. She set me up with a rheumatologist and was not planning on doing any more investigating into my high ASO levels.

As you can imagine, I am VERY confused. I don't know what's going on. I thought that rheumatic fever had to be closely monitored, and you usually need to get more doses of penicillin after the initial infection as it recurs often? If it wasn't strep leading to rheumatic fever then what caused my ASO levels to be so high when the test is strictly for strep?

The last few days I have had a very sore throat (no exposure to any illnesses at all in the last several days) and I'm a little concerned.


If anyone could give me any insight at all as to what might be going on and what the problem may be I would greatly appreciate it. I'm confused, sick, tired, and I hate living this way at only 20 years of age. I have no social life and cannot work anymore. I feel like I'm falling apart and it's so depressing.

 
Old 02-28-2010, 04:00 AM   #13
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

Quote:
Originally Posted by Victoria05 View Post
For the last several months I have felt horrible. I have had trouble walking (I've actually had to have my husband assist me in walking around a lot), I fall often when I try walking on my own, and I'm so fatigued I am unable to get out of bed most days.

I have had severe joint pain, primarily in my knees and wrists. My joints feel very stiff and so painful it reduces me to tears. I went to the doctor for this problem in June and was told it was probably lupus or rheumatoid arthritis. However, she did not order any blood work and told me to come back if the pain persisted.

By August, my joint pain was even worse and my joints were very swollen. I went back to my doctor a few weeks ago for blood work. A few days after my blood work she called and told me it looked like I had rheumatic fever. My ASO levels were four times the amount they should have been, and several other levels were off (although I wasn't told what levels).

I was given two shots of penicillin and had several tests done. The doctor was concerned about my heart...my resting pulse rate was over 133 (no anxiety, either).

A few days after this, the doctor called and told me I did not actually have strep like she originally thought. She set me up with a rheumatologist and was not planning on doing any more investigating into my high ASO levels.

As you can imagine, I am VERY confused. I don't know what's going on. I thought that rheumatic fever had to be closely monitored, and you usually need to get more doses of penicillin after the initial infection as it recurs often? If it wasn't strep leading to rheumatic fever then what caused my ASO levels to be so high when the test is strictly for strep?

The last few days I have had a very sore throat (no exposure to any illnesses at all in the last several days) and I'm a little concerned.


If anyone could give me any insight at all as to what might be going on and what the problem may be I would greatly appreciate it. I'm confused, sick, tired, and I hate living this way at only 20 years of age. I have no social life and cannot work anymore. I feel like I'm falling apart and it's so depressing.
Hi there, i cant help but can i say i am going through exactly the same with my 14 year old daughter.

Months and months of high ASOT level (she has monthly blood tests and the levels jump between 680 and 799). Was told she prob had rheumatic fever and this is the result. She has horrendous joint pain knees and ankles, fingers and now her hip. I am utterly frustrated because now they say as they cant find rheumatic probs in her joint she HASNT had rheumatic fever. She went to hosp a couple of days ago for hip xray and found nothing wrong and doc says high ASOT levels could be a red herring!!! So now i am left wondering what the hell is going on. Am calling out doc tomorrow to see how bad she is. She cant go to school, she has mock GCSEs coming up this week and a school trip to London next month so I understand COMPLETELY your utter depression. My daughter is due to see an immunologist next month so i will find out if he thinks these Strep levels are a red herring! I have done a lot of research on internet into strep levels (as you no doubt) and all postings mention joint ache. These doctors have to sit up and take note of all this. Because things dont show up in xrays etc there has to be something wrong. This has been going on for years with my daughter and she has put weight on because of being unable to run around etc. My doc says swimming is good but my daughter cant walk to car to get there. And yes i am sure swimming is good for temp pain relief it does not solve problem. I am going to fight this problem all the way and demand some action now. Your posting is a couple of years ago so I am hoping you may have got somewhere. Please could you let me know either way. I really dont mind keeping you informed when i see immunologist. Any info either way could help us. I wish you all the best and know EXACTLY what you are going through. I see it everyday in my daughter. Moira

 
Old 02-28-2010, 07:35 AM   #14
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

@moirahelp - post this on this site as a new thread to see if others are looking or seeking help/guidance/support, in case this is too old - good luck

 
Old 04-26-2010, 07:43 PM   #15
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Re: High ASO Titer...rheumatic fever...need help DESPERATELY

Quote:
Originally Posted by Victoria05 View Post
For the last several months I have felt horrible. I have had trouble walking (I've actually had to have my husband assist me in walking around a lot), I fall often when I try walking on my own, and I'm so fatigued I am unable to get out of bed most days.

I have had severe joint pain, primarily in my knees and wrists. My joints feel very stiff and so painful it reduces me to tears. I went to the doctor for this problem in June and was told it was probably lupus or rheumatoid arthritis. However, she did not order any blood work and told me to come back if the pain persisted.

By August, my joint pain was even worse and my joints were very swollen. I went back to my doctor a few weeks ago for blood work. A few days after my blood work she called and told me it looked like I had rheumatic fever. My ASO levels were four times the amount they should have been, and several other levels were off (although I wasn't told what levels).

I was given two shots of penicillin and had several tests done. The doctor was concerned about my heart...my resting pulse rate was over 133 (no anxiety, either).

A few days after this, the doctor called and told me I did not actually have strep like she originally thought. She set me up with a rheumatologist and was not planning on doing any more investigating into my high ASO levels.

As you can imagine, I am VERY confused. I don't know what's going on. I thought that rheumatic fever had to be closely monitored, and you usually need to get more doses of penicillin after the initial infection as it recurs often? If it wasn't strep leading to rheumatic fever then what caused my ASO levels to be so high when the test is strictly for strep?

The last few days I have had a very sore throat (no exposure to any illnesses at all in the last several days) and I'm a little concerned.


If anyone could give me any insight at all as to what might be going on and what the problem may be I would greatly appreciate it. I'm confused, sick, tired, and I hate living this way at only 20 years of age. I have no social life and cannot work anymore. I feel like I'm falling apart and it's so depressing.

 
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