Discussions By Condition: I cannot get a diagnosis.

High ASO Titer 6 months after strep infection

Posted In: I cannot get a diagnosis. 33 Replies
  • Posted By: MomofOne
  • June 29, 2007
  • 04:50 AM

HI,
My daughter had a strep infection back in December and another one in January. She never recovered and has a constant head-ache and stomach ache since then. She has also gotten sick frequently (a sinus infection, a rash, high fevers with viruses) but really no diagnosis. She has been on numerous antibiotics and just recently had another ASO Titer test and it was higher than her last! It was 591 in March, 515 in April, and now after being on antibiotics for 1 month, it is up to 552. She hasn't tested positive for strep for almost 6 months so I would expect to see her Titer levels going down at this point.
Any ideas? She has had numerous blood tests, xrays, ct scans. The only other thing that has shown up is that her lymph nodes in her abdomen were slightly enlarged and they did a biopsy that showed enterbacter and she was put on a sulfa drug for that.
Basically, she has had a stomach ache and head ache for 6 months and tires easily and no one has any answers.

Thanks for any ideas!

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33 Replies:

  • It is called chronic fatigue syndrome or post viral fatigue syndrome. she is sick after having a virus. The residual effects of it are causing her symptoms. There is alot of information in this forum alone regarding CFSFind her a doctor who treats other CFS patients. That person will be the one to help you the most. The problem is, people have been ill with this for years and doctors are just now beginning to realize that it is, in fact, a real disease.Did she begin with symptoms after being administered a vaccine?was she sick with a "flu" like virus as well as strep bacteria?was she involved in any form of "trauma" before her symptoms began? I wish you and your dauhter/family the best. Bless you...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I will definately start researching CFS. Thank you. But does anyone have any ideas about the ASO Titer being high? Could she possibly still have a strep infection? Her main symptoms are stomach ache and head ache. Her head aches are so bad that I have to give her Tylenol with Codeine. Her stomach pain gets worse if she eats but it is alleved a bit if she takes Gastrocrom 1/2 hour prior. The bottom line is that she has never recovered from the strep so it could possibly be CFS but I didn't see too much about stomach aches with that.
    Anonymous 42789 Replies Flag this Response
  • Mommmy Cat, Did she begin with symptoms after being administered a vaccine? Nowas she sick with a "flu" like virus as well as strep bacteria? Nowas she involved in any form of "trauma" before her symptoms began? No Thank you for the info on CFS. I will start investigating the CFS but her main symptoms are headache and stomachache 24/7. I replied with some more info too but forgot to log in so there will probably be duplicte info. Does anyone know what would cause the ASO Titer to increase even though she hasn't tested positive for strep for 6 months? Also, does anyone know much about enterbacter? She had a biopsy and there was enterbacter in her lymph nodes and they put her on a sulfa drug to cure it. Any other suggestions would be appreciated. Thanks,MomofOne
    MomofOne 5 Replies Flag this Response
  • HI, My daughter had a strep infection back in December and another one in January. She never recovered and has a constant head-ache and stomach ache since then. She has also gotten sick frequently (a sinus infection, a rash, high fevers with viruses) but really no diagnosis. She has been on numerous antibiotics and just recently had another ASO Titer test and it was higher than her last! It was 591 in March, 515 in April, and now after being on antibiotics for 1 month, it is up to 552. She hasn't tested positive for strep for almost 6 months so I would expect to see her Titer levels going down at this point. Any ideas? She has had numerous blood tests, xrays, ct scans. The only other thing that has shown up is that her lymph nodes in her abdomen were slightly enlarged and they did a biopsy that showed enterbacter and she was put on a sulfa drug for that. Basically, she has had a stomach ache and head ache for 6 months and tires easily and no one has any answers. Thanks for any ideas!I know this isn't of the greatest help but I've been through almost.the same thing as your daughter. I was out of school since I was 16 (jan 2005) with same symptoms and was not diagnosed until december of last year with strep titer of 960! Well my doctor put me on high dosage of antibiotics, and it was really frustrating because I was still experiencing the same symptoms (swollen lympth nodes, vomiting, no concentration) and it was not until last month that I have started to feel better. I don't know where my levels are at but I assume they are lower. I am thinking you should still wait out the course of antibiotics because everyones body works differently, or maybe go on a stronger dosage? Also does she happen to have any psoriasis? Because I developed some as a result and that can raise your strep levels too. I wish you're daughter good health, and shes not alone!
    Anonymous 42789 Replies Flag this Response
  • Katie, Your post did help me! It gave me hope that she will eventually get better. I was starting to get really depressed about it all. Her primary care physician just increased her dosage of antibiotics since her ASO increased while taking antibiotics. My daughter also has missed alot of school. I homeschooled her since January (2007). Thanks Again,MomofOne
    MomofOne 5 Replies Flag this Response
  • Look into: www.k12.comIf it's available in your state,you'll get textbooks and pc and great curriculum so she won't get behind. You'll also have teachers consulting with you.
    Monsterlove 2921 Replies Flag this Response
  • Monsterlove, You'll laugh but I already registered her for next year! But thanks for the suggestion. I'm fortunate that I live in a state where it is available for free through the charter school program in our state. It is the best option for us seeing she can't attend public school. The other problem seems to be is that when she isn't on antibiotics, her immune system is so weak that she catches all types of other viruses etc. Thanks,MomofOne
    MomofOne 5 Replies Flag this Response
  • I just happened upon your posting regarding your daughter's high ASO titer. My daughter experienced the same symptoms for over a year several years ago. We were referred to a pediatric Infectious Disease specialist at Children's Hospital of Philadelphia. After much testing, she was diagnosed with rheumatic fever. A course of a very old antibiotic - clindamycin - cured it. Her ASO titer was extremely high. It took three years to return to normal. Has been normal for the past 10 years. She still takes a maintenance prophylactic dose of Pen Vee K daily.Hope things worked out for you.
    Anonymous 42789 Replies Flag this Response
  • HI,My daughter had a strep infection back in December and another one in January. She never recovered and has a constant head-ache and stomach ache since then. She has also gotten sick frequently (a sinus infection, a rash, high fevers with viruses) but really no diagnosis. She has been on numerous antibiotics and just recently had another ASO Titer test and it was higher than her last! It was 591 in March, 515 in April, and now after being on antibiotics for 1 month, it is up to 552. She hasn't tested positive for strep for almost 6 months so I would expect to see her Titer levels going down at this point.Any ideas? She has had numerous blood tests, xrays, ct scans. The only other thing that has shown up is that her lymph nodes in her abdomen were slightly enlarged and they did a biopsy that showed enterbacter and she was put on a sulfa drug for that.Basically, she has had a stomach ache and head ache for 6 months and tires easily and no one has any answers. Thanks for any ideas! My son is 14 and also has the high ASO in the blood. His was 1200. Normal is 0-200. One day he started twitching. I took him to he Dr. and they could not find out why. We went to a Neurologist who did a bunch of tests and all negative. He did blood work and that is when they discovered the high ASO in his blood. That was five years ago. His last blood test showed a ASO of 512. So it has gone down. He has been on Penicillin twice a day for 4 years. He may be on it until he is 21. They are not sure. We never knew he had Strep. It was undiagnosed. The years of Penicillin is solely to prevent him from getting Strep again. If he gets Strep, it could go to his heart. He gets and Echocardiogram every year to check. He does have a small problem with the electrical shock on his EKG but nothing to worry about. The Strep attacked his spinal column and caused the movement tic. The doctors really know nothing about it or how to treat it. He sees the Neurolgist every three months. They thought it was Rhuematic Fever at first but with no heart valve trouble, they did not use the diagnosis. The Dr. calls it PANDAS although he does not have all those symptons. He has no stomach problems from it. Maybe it attacks in different ways. If the Strep is still high she probably should also be on Penicillin for a few years to prevent a reoccurance of Strep. This is just our experience. I wonder if you should take her to a Neurologist. Hope this helps. I know how frustrating it can be. We went through months of frustration.
    hessie28 1 Replies Flag this Response
  • as i read your posts it sounded familiar to me about my daughter. she is 11 and has stomachaches and headaches too. she also says it hurts more when she eats. she also has a tic in her stomach. she did have one test show high ASO too. i have to get it repeated but it is really hard because she is sooo sick of going to the doctors, thinks they don't know what they are doing. she has many other tests such as cat scans, xrays, urine and blood tests. we have been to psychiatrists, neurologists, gastro, therapists, etc and same as you no results! she has lost so much of her appetite, that from nov-feb, she lost about 27 lbs before i realized what was going on. now i have to make her eat and it sucks! she goes back and forth between gaining/losing a pound or two. she is also tired a lot and just doesn't feel well. please let me know if you find anything out and i will too! good luck to you!
    1koolteacher 14 Replies Flag this Response
  • have her tested for mycoplasma infections...really. mommy cat
    mommy cat 1654 Replies Flag this Response
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  • mommy cat, thank you for your idea. however i checked out what you said and my daughter doesn't have a lot of the symptoms...could she have that and not have all of the symptoms? i mean i know people can have disorders/diseases and not match exactly but it seemed like there was a lot more to it than what my daughter has been showing..hope that makes sense. i guess i wouldn't know for sure unless i had her testedi can't remember for sure what it said, is it a blood test? one i have to ask for? the docs won't do the test if they suspect it?
    1koolteacher 14 Replies Flag this Response
  • 1koolteacher, stomachaches, headaches and fatigue are all symptoms of mycoplasma infection. I had over 70 symptoms. A form of accupressure/allergy testing and applied kinseology took it all away for me!!!! Every symptom she has is from allergies, if you can believe that. I have been a western med nurse for 14 years so believe me, it was a little difficult for me to understand in the beginning but now I get it and it makes complete sense. If your daughter gets tested for the mycoplasma, please do not let them put her on long term antibiotics. The Ab therapy will hurt more than it will help in the long run. Find NAET or BioSET therapy and take her. It will save her life as it did mine, really. best wishes mommy cat
    mommy cat 1654 Replies Flag this Response
  • I am in the middle of an 8mth nightmare with my previously very fit and healthy 16 yr old daughter. She had a sore throat in february and was told by G P that it was a virus, she became worse with severe headaches, pain in abdomen, swollen and painful joints, sweats, nose bleeds, couldn't sleep despite being exhausted, weight loss but nothing was showing up on blood tests. Eventually she had an ear infection that was so bad she was in hospital for 5 days. Strep was found then, Ent specialist referred to Infectious Disease consultant and discovered her sinus tachycardia and glomerulonephritis. Rhematic fever was mentioned then later changed to severe group A strep infection. She is still exhausted, can't concentrate, had to cancel all her exams and can only attend school part time, even that is too much for her. She is now very depressed and can't see an end to it all. Doctor is going to label her as chronic fatigue soon, I am sure but I have researched RF and am convinced she has had strep from beginning. I would love to know how long before she is better, I want my daughter back and no one seems to care! Her stomach is very sensitive to medication too.
    Anonymous 42789 Replies
    • September 22, 2008
    • 07:58 PM
    • 0
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  • Hello,Looks like you are dealing with something we have dealt with for years. So please be patient and read on. My daugter finally was diagnosed with rhuematic fever when two valves in her heart had moderate damage. We had delt with years of strep, high ASO, SED rate and WBC. Even touching her was painful and she spent three years this way before we got a diagnosis and even then she did not get much better. We could not kill her strep. cillin drugs did not work at all on her and we ended up with levoquin finally being successful. You cannot do much for rhuemmatic fever other than anti inflamatories, but these are a definite need. We started on naproxen and ended up on diclofenac. you want to control the inflamation as much a possible to prevent organ damage. The best thing we did for our daughter was take out her tonsils and adnoids. These ogans harbor the strep and removing them four years after diagnosis actually brought about some relief. You must control the strep! doctors will recommend antibiotics, but my daughter had negative side effects from this including depression. It takes about nine days for strep bacteria to turn to strep infection and about nine days for the rheumatic fever to respond to the infection so you cannot mess around. Rhuematic fever can kill through congenital heart faliure. We now do a strep test every seven days and have a standing order for high dose antibiotics in case we ever get a positive. I stess hand washing everywhere and with everyone!! Out of 17 years of my precious daughter life she has suffered for four with rhuematic fever. It is lifelong and it is something you do not want to get lax with. You child will return to normal but you must watch her heart very closely!!!! You must also then try to prevent her from ever getting strep again and always do follow up tests after medication to be sure you have killed it if she does get it. It is not a great diagnoisis if this is what you have, and doctors learned that the illness was eradicated in this country so rarely diagnose. But it is manageable and your kid can live a healthy and normal life. My daughter teaches swimming lessons and is a black belt marshal artist. checking for strep and being careful of infection has just become a regular and standard part of her life that will never go away. So remove tonsils, start on anti inflamatories, listen to that childs heart, and control strep!Good luck. our hearts are with you.
    Anonymous 42789 Replies
    • December 13, 2008
    • 10:30 PM
    • 0
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  • what happens if aso was high and now it is back to normal? does it usually go up and down or once it is down, it is down?
    1koolteacher 14 Replies
    • December 15, 2008
    • 05:37 AM
    • 0
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  • I have a 7 year-old son who has been on penicillin for about a year because of high strep levels. They did a blood test in October 2006 but did not give us the results until January 2008! Apparently they were so far off the scale they could not be read. We have been told nothing only that he will need to be on penicillin for a year or two. He had tics and has now developed OCD behaviour.
    CatNass 1 Replies
    • January 14, 2009
    • 06:23 PM
    • 0
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  • All - Your stories are similar to mine and our son's. My advice, from personal experience, ... (1) If recurrent strep / sinus / respiratory / UTI infections occur, ask for a blood test to check for immunoglobulin levels (i.e. IgG, IgA, etc.). Low IgG levels often lead to lower white cell counts and inhibited ability of the body to fight off common infections - which can lead to rheumatic fever, pnsumonia, etc.(2) Strep infections don't always cause a positive throat culture. The bacteria can grow in other moist environments of the body. A strep titer is the only way truly know if the body is fighting an infection.(3) Per my ID, Immunologist, and Cardiologist... taking an over-the-counter vitamin Co-Enzyme Q10 can significantly improve a persons immune function and energy level. It is also non-toxic and safe for children - per our sons doctors. Dosage is by weight = 5mg of CoQ10 per kilogram of weight (2.2 lbs = 1 kg). The only side effect we've found is slight constipation when first starting to take the vitamin, but it will improve as the body gets used to it.Good luck to all!
    Anonymous 42789 Replies Flag this Response
  • I have found all of your stories to be so interesting. My 15 year old daughter has been very ill following a strep infection this past January. We did not know she had strep and so did not treat it until she had had it for several weeks. She became practically bedbound for about 3 months with joint pain, fevers ,nausea, dizziness, loss of concentration, confusion, memory loss, and crushing fatigue, and then seemed to be slowly getting better, but she is still very ill now now 7 1/2 months later. I suspected rheumatic fever, but she doesn't meet the strict criteria. (Also, her Sed Rate was not high.) She had many of the symptoms of rheumatic fever and continues to be extremely ill. Her ASO titer is back down in the high normal range now. Her allergist does think she is still fighting the strep. She is feeling so defeated and is angry that the doctors can't help her. Her rheumatologist did think she had a post strep arthralgia syndrome, but is really not helping us much. He said that the strep may have triggered chronic fatigue syndrome, and that the treatment for that is exercise (that is so absolutely ridiculous. She would LOVE to be able to exercise, but she is way too ill for that right now.) She has had the same thing happen twice before after strep infections--3 and 4 years ago, and was ill for months. She is feeling absolutely defeated, because she knows that even though she will eventually recover from this, that if she gets strep again this will all happen again. Can anyone give any advice as to a doctor we could see? We are in Missouri but will travel. Her current rheumatologist will not give antibiotic prophylaxis unless she has carditis, which she doesn't (although she did develop a heart murmur with this.) Thanks so much.Pam in Missouri
    Pamp81 1 Replies Flag this Response
  • My son is 14 and also has the high ASO in the blood. His was 1200. Normal is 0-200. One day he started twitching. I took him to he Dr. and they could not find out why. We went to a Neurologist who did a bunch of tests and all negative. He did blood work and that is when they discovered the high ASO in his blood. That was five years ago. His last blood test showed a ASO of 512. So it has gone down. He has been on Penicillin twice a day for 4 years. He may be on it until he is 21. They are not sure. We never knew he had Strep. It was undiagnosed. The years of Penicillin is solely to prevent him from getting Strep again. If he gets Strep, it could go to his heart. He gets and Echocardiogram every year to check. He does have a small problem with the electrical shock on his EKG but nothing to worry about. The Strep attacked his spinal column and caused the movement tic. The doctors really know nothing about it or how to treat it. He sees the Neurolgist every three months. They thought it was Rhuematic Fever at first but with no heart valve trouble, they did not use the diagnosis. The Dr. calls it PANDAS although he does not have all those symptons. He has no stomach problems from it. Maybe it attacks in different ways. If the Strep is still high she probably should also be on Penicillin for a few years to prevent a reoccurance of Strep. This is just our experience. I wonder if you should take her to a Neurologist. Hope this helps. I know how frustrating it can be. We went through months of frustration.Hi, a similar experience happened for my boys as well. They are on penicillin 250 mg vk 2 per day also. I recently took them to have a microbiologist test a live sample of their blood and we discovered they have a mild "leaky gut" due to the penicillin breaking small holes through their intestines. This is a side effect when using penicilin for so long. This can cause a vicious cycle where bacteria can re-enter into the blood stream and travel throughout the body. So it is important if the child is taking penicilin for such a long time to also give a non-dairy probiotic. For the penicillin gets rid of the bad probiotics but also take away the good probiotic which need to be replaced. As well as make sure they are eating a high vegetable & fruit diet to maintain a healthy intestine to prevent contipation and make sure they are having a bowel movement regularly every day. God bless and good luck. btw, does your son have challenges with constipation?
    Anonymous 42789 Replies
    • December 6, 2009
    • 10:37 AM
    • 0
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