Gingergrrl
Senior Member
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That is a very interesting question (although I have no idea of the answer)! My ASO titers remained elevated for a long time although they were normal long before I started Rituximab.
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Antistreptolysin O around 300 for 1 year --- antibiotics warranted?
- Thread starter Wonkmonk
- Start date
That is a very interesting question (although I have no idea of the answer)! My ASO titers remained elevated for a long time although they were normal long before I started Rituximab.
used_to_race
Senior Member
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- 193
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- Southern California
Lucky you
I was just talking to a girl who doesn't post on these forums (friend of the family) who has had elevated ASO and AntiDNAse B for a while now, as well as high ESR and CRP. Her rheumatologist hasn't found anything else wrong with her, and she keeps getting worse. Didn't respond to a month of penicillin, and she just went to the ER with fever and other symptoms after trialing an immunosuppressant. Between her recent story and the numerous stories I see on here, I do consider myself lucky that I don't have a lot of the abnormalities that seem to make people more severely ill. I just wish that my case were as simple as it seems to be on paper...
That's the most serious concern about Rituximab in my view. In CFS we are dealing with a patient population with suspected viral trigger and/or cause. If you suppress your immune system, you may be doing exactly the wrong thing.
I thought about doing Rituximab before the negative Norwegian results were known. I have highly elevated HSV-1 IgG titers and I thought, maybe the immune system is producing too many of them and that causes some damage (as is known for the ASO antibodies which are actually not autoantibodies but still attack parts of the body because of antigen similarities).
But I didn't decide to do it and I think it was the right decision. I was wondering: What if these HSV-antibodies are just a marker and not a cause of the disease? What if my body somehow needs these antibodies against HSV-1? If that's the case and you destroy the antibodies you need, then Rituximab is a grave error and this may well have happened in the cases of Mr Bodden and Whitney.
On the other hand, if you have a lot of autoantibodies who everyone agrees shouldn't be elevated under any circumstance, and no abnormality in viral titers, there might be a better case to try Rituximab.
The bottom line is: The problem about RTX at this time with the limited knowledge about it's effects in CFS is, you might be doing exactly the wrong thing.
Update on the adverse effects of the antibiotics:
Tinnitus has (almost) gone back to baseline. I think it was a psychological effect. If someone is telling you a medication could worsen your tinnitus, there is a good chance that you actually feel it does even if there is actually no change. I was always hopeful that it's going to get better because ototoxicity (damage to the ears) after erythromycin has so far been reported mostly for older patients who took higher doses than I did.
The covering of the tongue has still not disappeared and has been identified as colonization by Haemophilus parainfluenzae, a low-virulence bacterium that usually doesn't pose any known danger to a person with intact immune system. The treatment is cleaning the tongue regularly and hoping that it disappears. Tests for candidiasis or other yeasts were negative.
Regarding allergies, the worst pollen to which I am allergic is rye and it was actually very mild this year. So while I seem to have picked up one or two new pollen allergies (probably birch and beech) after the antibiotics (causality is unclear), the worst preexisting allergy doesn't seem to have gotten worse, which is a very good news.
Last small thing as a side note: A blood clot is still jamming one of the veins on the back of my hand where the needle was. My sister who is a doctor in training says it's going to disappear and blood flow will normalize again, but after almost 3 months it still hasn't. It isn't causing me any pain or discomfort and my sister says it's nothing to worry about. But it still strange to see all you veins in your hand fill with blood, but one doesn't.
So the adverse effects - at least those I am aware of - have been limited and seem to be getting better and I am hopeful they will all go away.
I would still advise everyone to carefully consider a decision to take high-dose antibiotics. Although it seems to have turned out OK in my case, it is definitely not risk-free, even if it is a usually well-tolerated antibiotic.
Tinnitus has (almost) gone back to baseline. I think it was a psychological effect. If someone is telling you a medication could worsen your tinnitus, there is a good chance that you actually feel it does even if there is actually no change. I was always hopeful that it's going to get better because ototoxicity (damage to the ears) after erythromycin has so far been reported mostly for older patients who took higher doses than I did.
The covering of the tongue has still not disappeared and has been identified as colonization by Haemophilus parainfluenzae, a low-virulence bacterium that usually doesn't pose any known danger to a person with intact immune system. The treatment is cleaning the tongue regularly and hoping that it disappears. Tests for candidiasis or other yeasts were negative.
Regarding allergies, the worst pollen to which I am allergic is rye and it was actually very mild this year. So while I seem to have picked up one or two new pollen allergies (probably birch and beech) after the antibiotics (causality is unclear), the worst preexisting allergy doesn't seem to have gotten worse, which is a very good news.
Last small thing as a side note: A blood clot is still jamming one of the veins on the back of my hand where the needle was. My sister who is a doctor in training says it's going to disappear and blood flow will normalize again, but after almost 3 months it still hasn't. It isn't causing me any pain or discomfort and my sister says it's nothing to worry about. But it still strange to see all you veins in your hand fill with blood, but one doesn't.
So the adverse effects - at least those I am aware of - have been limited and seem to be getting better and I am hopeful they will all go away.
I would still advise everyone to carefully consider a decision to take high-dose antibiotics. Although it seems to have turned out OK in my case, it is definitely not risk-free, even if it is a usually well-tolerated antibiotic.
Update: The allergy against birch pollen did not return this year. I have a birch tree in my garden and one right beside my window that is currently in full bloom and I have no symptoms at all.
I definitely had a birch pollen allergy last spring right after the antibiotics course. I checked it with a provocation test with said birch tree. I am very certain that it was connected to the antibiotics treatment, but maybe (hopefully) it was a one-time effect only that disappeared once the microbiome has normalized.
That said, the white covering of the tongue (tentatively identified as haemophilus parainfluenzae) has still not disappeared. That covering appeared for the first time during the antibiotics treatment so it's also likely conntected and a year later it is still there.
That indicates that disturbances of the microbiome can be really long-term. But it seems the only discernible lasting effect is the covering of the tongue. All the more serious adverse effects including the birch pollen allergy have disappeared. So apart from the tongue, the antibiotics have made me neither better nor worse.
If a bacterial cause is suspected, it definitely makes sense to look into high-dose antibiotics, but it has to be carefully considered, and one should be aware that adverse effects and long-term changes in the microbiome are possible.
I definitely had a birch pollen allergy last spring right after the antibiotics course. I checked it with a provocation test with said birch tree. I am very certain that it was connected to the antibiotics treatment, but maybe (hopefully) it was a one-time effect only that disappeared once the microbiome has normalized.
That said, the white covering of the tongue (tentatively identified as haemophilus parainfluenzae) has still not disappeared. That covering appeared for the first time during the antibiotics treatment so it's also likely conntected and a year later it is still there.
That indicates that disturbances of the microbiome can be really long-term. But it seems the only discernible lasting effect is the covering of the tongue. All the more serious adverse effects including the birch pollen allergy have disappeared. So apart from the tongue, the antibiotics have made me neither better nor worse.
If a bacterial cause is suspected, it definitely makes sense to look into high-dose antibiotics, but it has to be carefully considered, and one should be aware that adverse effects and long-term changes in the microbiome are possible.