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.
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.
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.
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.
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.
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?
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?
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.
Re: High ASO Titer...rheumatic fever...need help DESPERATELY
Quote:
Originally Posted by Victoria05
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.
Re: High ASO Titer...rheumatic fever...need help DESPERATELY
Quote:
Originally Posted by Victoria05
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
Re: High ASO Titer...rheumatic fever...need help DESPERATELY
Quote:
Originally Posted by Victoria05
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.
Re: High ASO Titer...rheumatic fever...need help DESPERATELY
Quote:
Originally Posted by moirahelp
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
I’m so sorry that your daughter has had so much pain. I pray she is doing better and that Victoria is also well and was able to give you some good advice. I want you to know that there is hope. Up until a few years ago (when I was in my late 30s) I had joint pains, sharp shooting pains, burning, numbness and tingling in my body 24/7. It took years to figure out that I had an Autoimmune Disorder. I think my body developed an autoimmune disorder because of toxic overload. I think that the anti-seizure medicines I have had to take for years, the many perms I put in my hair and all the chemicals I used in my house and in my yard, plus all the chemical laden products I put in and on my body could have caused all my pains. Once I stopped stressing over all my ailments and started focusing on taking care of myself, cleaning up my diet (eating whole organic foods and drinking pure filtered water plus taking a good multivitamin, probiotic and digestive enzymes), cleaning up my environment (using chemical free cleaning products like baking soda and vinegar and putting shower filters on showers) and just paying attention to the way I feel when I am exposed to certain products (I avoid synthetic fragrances) and certain foods (I have food sensitivities) I can now say I feel like a new woman. I now feel my age, which is 42 (I used to feel twice my age). Even though I feel so much better, I still have to go to the doctor to have my antiseizure medicine and blood levels checked. The last time I had my blood checked, for reasons unknown to me, my doctor checked my ASO titer and she told me it was positive and that I have strep. I don’t feel like I have strep and do not want to take an antibiotic. I do not like taking medicine so I have been researching what causes a positive ASO (it may be related to my autoimmune disorder) and also researching ways to treat infection naturally. I have found that I should eat- Whole Grains-loaded with zinc, Bananas, contain vitamin B6, Sweet Potatoes, source of beta-carotene (a form of vitamin A), which your body needs to make enough white blood cells to fight off infection, Garlic-Allicin, one of the active components in freshly crushed garlic, can zap viruses by blocking the enzymes that lead to infection, Parsley, the high vitamin C, beta carotene, B12, chlorophyll and essential fatty acid content render parsley an extraordinary immunity enhancing food, and Cranberries contains A, C, K, fiber, potassium, manganese and other important nutrients. During my research I came across your post and felt like I should share this info with you and your daughter. Please tell your daughter to try not to stress, get plenty of rest, exercise, and eat well and hopefully she will have positive results. I suggest you take your daughter to a health food/ nutrition store and ask them what nutritional and cleansing products they recommend to help your daughter heal and cleanse her body. Please respond and let me know how your daughter is doing. Take Care and May God Bless you and your daughter!
Re: High ASO Titer...rheumatic fever...need help DESPERATELY
You have certainly given me something to think about re food and chemicals. Have seen immunologist and he says not auto immune disease but my doc still thinks its lupus. Another different test now being done for lupus. She has now registered "weak rheumatism" from borderline rheumatism about two months ago. Strep continues up and down now at 650. She cant do any exercise as her joints so bad and been waiting since april for physio appointment. She now has low blood pressure. On result of the blood tests next week, i have intimated to my doc i want her in a childrens hosp and fully examined and tested thoroughly. Meanwhile i will look at her food intake which to be honest is extremely minimal due to her being overweight and she doesnt want to eat to risk putting on more. I will let you now how tests go but thank you for taking time to reply.
Re: High ASO Titer...rheumatic fever...need help DESPERATELY
Quote:
Originally Posted by moirahelp
You have certainly given me something to think about re food and chemicals. Have seen immunologist and he says not auto immune disease but my doc still thinks its lupus. Another different test now being done for lupus. She has now registered "weak rheumatism" from borderline rheumatism about two months ago. Strep continues up and down now at 650. She cant do any exercise as her joints so bad and been waiting since april for physio appointment. She now has low blood pressure. On result of the blood tests next week, i have intimated to my doc i want her in a childrens hosp and fully examined and tested thoroughly. Meanwhile i will look at her food intake which to be honest is extremely minimal due to her being overweight and she doesnt want to eat to risk putting on more. I will let you now how tests go but thank you for taking time to reply.
I am sorry to hear that you haven’t found the answers to your daughter’s pain. I know it is very frustrating because I went through the same thing trying to find out what was wrong with me. I still don’t know exactly what is wrong, but I am at peace with not knowing because I have put it in God’s hands and I am now in control of my body and the way I feel and I will never totally rely on a Doctor again. For years the Doctors just made me feel like I was a hypochondriac. One doctor even talked me into taking an anti depressant. I only took Paxil for a month and it was the worst month (Feb 2002) of my life- the medicine actually made me depressed. I am glad I found the strength to say no…I have 2 beautiful kids and a wonderful husband that I want to enjoy…being on a medicine that actually made me depressed made it hard for me to even get out of bed. It was then, in 2002, that I decided to accept the fact that I may have to live the rest of my life in pain. I gave up my search for answers and just asked God to guide me into making the right choices in taking care of myself and my family. I felt like a great weight was lifted off of my shoulders and believe it or not my pain decreased tremendously. I started eating better, exercised and got plenty of rest. In November 2003 I went to the Doctor for a physical (only because my husband had put money in our flexible spending account that needed to be spent) and since I was still having pain I asked the doctor to check my ANA because I knew (from what Doctors had said in the past and from my previous research) that there was a chance I could have Lupus… Connective Tissue Disease…Rheumatoid Arthritus…but tests could never clarify any of these. My ANA came back high positive. My SSA titer was also high (indicates Sjogren’s- but I don’t have the major symptoms)…. The Doctors I have seen since then say it is obvious I have an Autoimmune Disorder but can’t tell me exactly which one. I have decided that medical doctors don’t always have the answers and usually if they do have an answer, rather than getting to the root cause of the ailment, all they want to do is prescribe medicines that usually just treats the symptoms and sometimes cause more harm than good. I am sorry I am writing so much, but I guees I am just trying to let you know that there is a chance that you will not find the exact diagnoses for your daughter and that I believe that the main thing you need to focus on with your daughter is helping her to be positive and let her know that God is with her. God created her body so it can heal. I know that from experience. Even though I am not totally healed, I have at least gotten rid of all of my joint pains (I don’t take any pain medicines or medicine for my autoimmune disorder). Your daughter needs to focus on feeling better and being happy. She needs to give her body the nourishment that she needs. You can find some great juicing recipes for joint pain on the internet. You may consider putting her on a modified elimination diet, where she follows an Anti-Inflammatory Diet for six weeks, and then introduces one food at a time back into her diet. In addition to eating a “clean diet”, one that doesn’t cause allergic responses in the body, and one which reduces inflammation, your daughter probably should get on some quality supplements. You probably should ask your doctor to test to see if she is deficient in any vital nutrients such as vit D, magnesium, calcium, essential fatty acids… I highly recommend going to your local health food / Vitamin store and speaking to the owner. I know you said that your daughter is in too much pain to exercise, but I recommend, as soon as she feels up to it, that she tries at least some kind of sitting exercises (search Sitting exercises) so she can build up the strength and energy to get out of the house and enjoy her life outdoors. If she doesn’t get outside much there is a great chance that she is deficient in vitamin D. If she is deficient in this will mean that her body will not be able to naturally rebuild cartilage in her joints when it is worn away. This leads to a more rapid development of arthritis. Also, make sure she always gets a good night sleep (search quality sleep tips- stay on a schedule, sleep in total darkness and quiet). I hope my tips help you and your daughter. May God Bless you two with the knowledge and strength to live a happy healthy life.
Re: High ASO Titer...rheumatic fever...need help DESPERATELY
Dear Moirahelp,
I saw your posts and wondered if you ever got a definite diagnosis for your daughter? Our family went through the exact same thing at the exact same time with our 11 year old daughter. She woke up one morning with severe pain in her foot to the point that my husband had to carry her for three days. We were out of state attending to my Grandma, who was dying of pneumonia. Took our daughter to Urgent Care and they diagnosed arthralgia caused by a virus. However, I made them check some labs and her CBC and sedimentation rates were high. We were told to consult our family Dr. upon return to home. We did this the next week and he also diagnosed arthralgia and told us to call back if she wasn't better in 10 days. The pain moved to both feet, then her ankles and her knees. We called back and labs were repeated Sed rate was still high but gone down some. Dr. told us to wait two more weeks. Pain moved upwards to her hips, neck and hands. I called the Dr. every week begging them for more tests. Finally, they ran an arthritis panel, which came back normal. We were told to wait a total of 8 weeks to see if the pain would go away. She took daily ibuprofen for the pain and was in tears every single morning as she awoke. At one point, she could not pick up a gallon of milk or unbuckle her seatbelt because the pain in her hands was so bad! Our Dr. totally did not take us seriously. We kept telling him she was a competitive gymnast and now she could barely walk down the stairs in the mornings-and she is 10! Finally, after 8 weeks of this pain, we were referrred to the Children's Hospital to see a pediatric rheumatologist. This took another 7 weeks to get in since she was so busy. Finally, in June 2010 after she first got sick in February 2010, we saw the pediatric rheumatologist. She took one listen to her heart and found a new heart murmur. She suspected rheumatic fever. Strep antibody titers were done and it came back at over 850. We were referred to a pediatric cardiologist, an echo was done and they found she had mitral valve prolapse. The diagnosis of rheumatic fever was made and she was finally started on prophylactic antibiotics 4 months after she got sick! She now takes a sulpha antibiotic daily (allergic to PCN) to prevent a recurrence of the rheumatic fever. We take her and her siblings in regularly(to a new pediatrician, dare I say) for regular rapid strep tests. She never had the symptoms of strep and never complained of a sore throat before the joint pain began. Her symptoms were some nausea and vomiting for two days in a two week period, spaced apart by about a week, along with extreme fatigue and a low grade fever. The joint pain began two weeks after this. Since then, my other daughter has been diagnosed with strep at a well child checkup with no symptoms other than a runny nose. I made the Dr. do the strep test and it came back positive on the 24 hour culture after being negative on the rapid test. We are now investigating if someone in our family is a strep carrier.
I hope you got a definitive diagnosis for your daughter. My point in posting this is that rheumatic fever does still exist today in 2010, despite the fact that I had the Dr. who misdiagnosed her tell me it is unheard of in anywhere other than third world countries. We have since had a Dr. at an urgent care clinic that my oldest child went to in college also tell her the same thing and refuse to do a strep test on her and told her her little sister could not possibly have had rheumatic fever because it doesn't occur in America anymore! Be proactive for your child and do not let them tell you the joint pain is nothing. Get her to a pediatric rheumatologist. They have been trained to recognize this disease and the Dr. that diagnosed my daughter has written and spoken at medical conferences about it's reoccurence in the US. Good luck and please update if you can. C
Re: High ASO Titer...rheumatic fever...need help DESPERATELY
My daughter has post strep reactive arthritis. The strep settled in her joints causing lots of moving joint pain. I was told that the pain is from the waste products of the strep and it will take time for it to work out of your system. She also has POTS(postural Orthostatic tachycardia Syndrome) She is weak and dizzy and faints. She has organ pain, insomnia. The morning are horrible for her. She is nauseous a lot.
Quote:
Originally Posted by Victoria05
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.
High ASO Titer...rheumatic fever...need help DESPERATELY 
