Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

Antistreptolysin O around 300 for 1 year --- antibiotics warranted?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Wonkmonk, Jan 26, 2018.

  1. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    Hello everyone,

    I had the following titers for antistreptolysin O (ASO):

    February 2017: 309
    April 2017: 326
    January 2018: 284

    The normal range is <200 in my lab, so all three were flagged as elevated.

    Dr Lerner recommends to treat possible streptococcal infection before starting antiviral treatment, but his cutoff for starting therapy is ASO>400.

    According to Dr Lerner's research, untreated streptococcal infection can render antiviral treatment ineffective. I am wondering if this could be the reason why I only had limited success with high-dose Valacyclovir over the past year and if giving antibiotics a trial would make sense.

    Treatment would be Ampicillin/Sulbactam 2000mg/1000mg IV twice a day for 6 weeks.

    I'd love to hear your opinions.
     
    Gingergrrl likes this.
  2. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    Hello folks,

    another therapy flop.

    I started Ampicillin/Sulbactam 10 days ago and in the first few days, it seemed to help a bit, which was probably a placebo effect. After 5-6 days, the effect vanished and the only positive thing I can think of now is reduced pain in the distal knuckles of my left hand.

    Yesterday, I developed moderate to severe Ampicillin exanthema on large parts of the body, which is a probably benign and transient hypersensitivity condition known to affect up to 10% of ampicillin patients. It's not a dangerous condition and it doesn't actually force you to stop the drug, but since it doesn't really help much and the evidence for strep infection or rheumatic fever was quite weak in the first place, we decided to discontinue the treatment.

    I'm glad we could do 10 days because that's usually the point where most bacteria - if present - are dead and the likelihood of developing antibiotics resistance is low, so we can stop treatment at this point. The exanthema isn't painful, but itching quite a lot. It's about like having 20 or so mosquito bites over your whole body.

    But at least bacterial involvement as a reason for my symptoms is now effectively ruled out. I had already received 3 months Isoniazid/Rifampicin in 2016 for latent Tuberculosis and now 10 days of ampicillin/sulbactam, which is a broad spectrum antibiotic. If bacteria were the cause, one would at least expect significant symptom relief from antibiotics. Many patients are even symptom-free after a week. The fact that almost nothing changed with either treatment suggests that bacteria are not to blame for my CFS.

    I'll probably try Valgancyclovir next and if it doesn't help (which I currently expect), maybe Rituximab is a last option. Hopefully the Fluge/Mella study will be out soon so I can form a better-informed opinion if that makes sense.
     
    BadBadBear and Gingergrrl like this.
  3. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,010
    Likes:
    32,335
    USA
    @Wonkmonk I am so sorry the ampicillin trial did not work and you ended up getting the skin rash. I think it was worth a try based on your elevated ASO titers. Will you be re-testing the ASO titer to see if it has reduced from the antibiotics (even though it did not help your symptoms)?

    How are you basing the decision to try Valcyte vs. Rituximab and will you be able to get them in Germany or have to travel?
     
  4. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    Yes, I'll probably going to test the ASL titers, but perhaps in a few weeks, to see how they are after things have settled down. Some healthy people also have permanently elevated ASL titers, so the treatment might not have been necessary at all. But I think I had to try it, just to be sure it isn't the cause of the symtoms or some symptoms.

    Regarding next steps, I am lucky to have a doctor in my family so I have all treatments available without need to travel.

    I am probably going to try Valcyte first and see if there is a benefit. It may well be, because it has a broader spectrum than Valacyclovir, so maybe it is more effective against the virus that might be the cause of the symptoms and Valacyclovir was only partially effective (I'm still convinced I had a significant positive response to Valacyclovir).

    If Valcyte doesn't work, I will probably try Rituximab thereafter. The thing there has been no known autoimmunity issue in any of my tests (and I had quite a lot).

    BUT: The first patient Drs Fluge & Mella treated with Rituximab in their 2009 study also had no known autoimmunity, and the two other patients in that study had only one known autoantibody that could not explain the symptoms (Diabetes I and thyroid autoimmunity).

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711959/

    Also in his other studies, as far as I know, there was no clear indication that those patients with confirmed autoimmunity were responders and those without autoimmunity were nonresponders.

    So the fact that I have not been tested positive for any autoimmunity may not necessarily mean that Rituximab isn't going to work.

    It may be the case that Rituximab responders might have another autoantibody that is as yet unknown and can't be detected in lab tests. Then I might have that autoantibody or not, and the only way to find out would be trying Rituximab.

    It may also be the case that the problems are not caused by an autoantibody but instead by "normal" antibodies. For instance, the antistreptolysin antibody is not an autoantibody, it is produced against bacteria, not against own body tissue, but it can still attack own body tissue because some cells have a similar protein as the bacterium. This - if I understood correctly - was a theory of Prof. Edwards, who surmised that Rituximab responders' B-cells may produce too many low-affinity/broad spectrum antibodies that are causing disfunction inside the body, but are not actually autoantibodies.

    Two findings make me suspect that maybe my CFS is perhaps not due to a viral infection, but rather an immunological problem: (1) No one can tell me why I have a HSV-1 IgG of >1:20,000 (normal is in the low hundreds), despite using high-dose Valacyclovir for 9 months. That's a big mystery and perhaps it's not really good to have this huge number of HSV-1 antibodies. And (2), as in your case, I don't get sick anymore. Last time I was sick with a flu or flu-like illness was exactly 4 years ago. That's strange and suggests that there is some kind of overactivation of the immune system, and possibly the B-cells.

    Or (3) it is in fact a viral infection and it is caused by Epstein Barr and antivirals somehow don't help. Then with the B-cells you also kill the EBV, maybe more effectively than with the antivirals, and maybe in the end that's the reason why Rituximab is successful in a subset of patients even with no autoimmunity.

    So there is reason to believe Rituximab might be worth trying. My main concern is that it might make me worse, for example if it is actually an infection and I am killing my B-cells and they were not the problem, but without B-cells I am even worse at controlling the infection, and this might very well make me worse.

    In Germany we have the story of a famous soccer player who got severe CFS and tried Rituximab at the Charité and then got much worse to very severe CFS. The Charité henceforth declined to do any further Rituximab trials.

    So that risk is real. It might not be a large risk in % terms. Only few patients seem to have reacted in that way, but it is definitely possible and it would be a risk I'd have to take if I try Rituximab.

    The thing is, reading Dr Fluge/Mellas studies before the failed on 2017 is so encouraging. It reads like this drug can really help where nothing else helps. It's hard to believe that this was all coincidence or placebo effects. And then of course there are reports like yours, although I am well aware that you're not a typical CFS patient (maybe not even a CFS patient at all).

    I will have to think about it, and maybe I am going to wait until the latest Fluge/Mella study is published. But right now I am leaning toward trying it.
     
    Gingergrrl likes this.
  5. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,268
    Likes:
    3,882
    Pacific Northwest
    I recently spoke with my ME/CFS doctor about Rituximab. He said that before I could try it, we needed to be sure that I have no active infections first. The rationale for using it on me would be to resolve autoimmunity.

    This reasoning seems different than what you're proposing above.
     
  6. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    Is the current view at OMI that Rituximab should only be used in cases of confirmed autoimmunity?
     
  7. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,268
    Likes:
    3,882
    Pacific Northwest
    I don't know about OMI.

    From what I understand, the patients it may help are those without active infections but with autoimmunity, but there is no solid evidence at this point in time.
     
  8. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    But in the Fluge/Mella studies, as far as I know, there never was a relation between known autoimmunity and responiveness to Rituximab.

    As mentioned above, one of their very first patients who responded had no known autoimmunity:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711959/

    "Patient 3 had no history of autoimmune disease."

    Also in their other studies, I am not aware that there was any link between autoimmunity and response to Rituximab, and it's safe to say that they must have thoroughly investigated if there is any such link, because after all that's their main hypothesis of how Rituximab works.

    I think it is true that those patients with autoimmunity have good reason to hope for a good response with Rituximab, but I also think the evidence we have doesn't seem to suggest that Rituximab works only in patients with known autoimmunity.
     
  9. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,268
    Likes:
    3,882
    Pacific Northwest
    Though evidence based studies are helpful, they are not cast in stone. Studies take a bunch of people who are unique individuals with different genetic and environmental factors and test one or more specific interventions, with varying results.

    I discuss my specific situation with doctors I trust, ask for their rationale in prescribing treatments, get my questions answered go my satisfaction, then choose treatments that make sense for me, rather than basing my decisions on what would work for other patients.

    My father was in the clinical trial for Rituximab nearly 20 years ago, so I'm aware of what it does and what the risks and benefits are. It is not for everyone and there are risks involved, as there are for many other treatments. But it may help some of us.
     
  10. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    That's true, I don't dispute that studies can only tell us so much.

    My main point was only that there is no evidence that suggests Rituximab can't help you if you don't have any proven autoimmune disease. In the Norwegian trials, some patients obviously did respond and they did not have any confirmed autoimmune disease.
     
  11. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    Interestingly, after the antibiotics, it feels like I am improving a bit, esp. kidney pain, back pain and heat flashes are much better. Let's see if it stays that way and how far it goes.

    I also want to do a second course of this antibiotic before trying other things, just to make sure this treatment option has been exhausted (I did 10 days only and Dr Lerner recommends 30 days).

    Unfortunately, the rash I developed a week ago has not disappeared so far, and there was even a flare up two days ago, so we currently can't restart it.

    Btw, the Ampicillin-Exanthema appears in up to 90% of patients with infectious mononucleosis, who are treated with Ampicillin. That's why the packaging information says Ampicillin may not be used in patients with infectious mononucleosis. I find that interesting because EBV, which causes mononucleosis, is also suspected to play a role in CFS. And I got the exanthema as well, so there may be a connection (usually up to 8% get it, so I might just be unlucky, though).
     
  12. CFS_Kristin

    CFS_Kristin Senior Member

    Messages:
    120
    Likes:
    68

    When I first got sick 2 years ago with CFS I was diagnosed with strep throat. They gave me antibiotics and I developed a full body rash for 5 days and felt even sicker. (I’m not allergic to the antibiotics bc I’ve done a test) I have a feeling mono had something to do with the rash, even though I tested negative for EBV.

    Afterwards my ASO Titer remained high around 260 and was positive for Streptoymze. My doc diagnosed this as adult rheumatic fever. He put me on penicillin 2x a day been on it for over a year, but it made no difference in my symptoms. (I’m still bedriddren).

    My ASO Titer did not drop until I started doing Ozone treatments, then it dropped 100 points to around 110, to which now it reads negative. However I’m still very very sick.
     
    ljimbo423, sb4 and Gingergrrl like this.
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,010
    Likes:
    32,335
    USA
    That is so interesting and when I had confirmed mono in 2012, my former PCP (GP) initially put me on an antibiotic in case it was strep (but the strep tests were negative and mono tests were positive plus the extremely elevated liver values and other markers of mono). I was not put on Ampicillin b/c I am allergic to Penicillin but I remember reading at the time that if you had mono and were put on Ampicillin or Amoxicillin (not sure if these are the same thing?), that you could get a severe rash that is often mistaken for an allergic reaction and misdiagnosed. It is fascinating to me that you got the rash now, w/the elevated ASO titers, as if your EBV is still acting as active Mono.

    It sounds like a similar situation and I wonder if you really had mono from EBV at the time (vs. strep)? Were your ASO titers elevated at that time (or only later).

    I had an unknown throat infection in 2010 (which was two yrs before I had mono) that my former ENT kept diagnosing as strep but then two strep tests came back negative. I was put on Levaquin which caused severe neurotoxic reaction and damaged tendon in my arm but that is a separate issue. The main thing at the time which was so odd was several months later I saw an infectious disease doc (b/c I was still so sick from Levaquin reaction) and in her testing, my ASO/Streptozyme was positive and elevated (it was 200+ but I don't recall the exact number).

    She, however, did NOT think that I had rheumatic fever or put me on antibiotics. But it was a mystery b/c the two strep tests had come back as negative months earlier, so why were the ASO & Streptozyme positive? I'd had chronic tonsillitis and strep throat as a child, teen, and young adult but I was 39 at the time of this throat infection in 2010. So I wondered if it was a false positive and when we re-tested it eventually went down to 100 and became negative (without any antibiotics). And then in 2012, I got mono from EBV. I have always felt that ASO+ test was relevant but when I first met my ME/CFS doctor in 2014, he ran the ASO test and it was completely negative.

    I am sorry that you are still sick even though that titer dropped. How do you interpret it all now?
     
    pattismith likes this.
  14. Art Vandelay

    Art Vandelay Senior Member

    Messages:
    328
    Likes:
    1,480
    Adelaide, Australia
    When I first got EBV, I was initially misdiagnosed with tonsillitis and put on amoxycillin. I developed a severe itchy bright purple/orange rash from head to toe and saw another doctor. Luckily he was smarter than the first doctor and realised that the rash was due to the interaction between EBV and the antibiotic. (Unfortunately he suggested a steroid to reduce the rash which I believe has made my CFS worse in the long run.)

    I still got the rash on and off a lot in the first 3 years of my CFS and I still see it now 19 years later.
     
    Last edited: Feb 17, 2018
    BadBadBear, sb4 and Gingergrrl like this.
  15. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    Yes, very interesting, also given that I now have the rash for almost 10 days and the Ampicillin exanthema usually disappears after 3-6 days after discontinuing the drug.

    BUT: Even without any antibiotics, you can get a similar rash during mononucleosis, which lasts 2-3 weeks.

    So the current rash I have, which flared up a few days ago and seemed to get worse, maybe isn't because of the ampicillin now, maybe it is because EBV is somehow active without it showing up in the usual antibody-based blood tests. If the rash doesn't disappear soon, we might run EBV PCR test to see if there is reactivation or otherwise active infection.

    I think EBV is somehow part of the puzzle in many CFS patients, and science has not yet figured out what its role exactly is.
     
    pattismith and Gingergrrl like this.
  16. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    The rash has still not disappeared. It is getting better in most places, but has reappeared on my arms today. But it is now much less itchy than at the beginning, which was a big problem.

    Apart from the rash, I think I have improved since doing the antibiotics. It feels like there was a positive effect. Once the rash is gone, I want to do a 2nd course of the antibiotic to see if it helps further.
     
    Gingergrrl likes this.
  17. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    I am wondering if that reappearing rash (or in my case the rash after antibiotics) could be a sign that there was no full recovery from mono/EBV infection.
     
  18. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,010
    Likes:
    32,335
    USA
    That is great news and I am glad that you have had some improvements!

    This would be my interpretation as well but I assume there is no way to ever prove it.
     
  19. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    Found this, in another context, but it's essentially exactly this hypothesis:

    In the 1990s,researchers in Australiafound evidence that some athletes who continued to exercise while suffering from flu developed a form of chronic fatigue syndrome that, in some cases, stuck around for several years. “These are painful case histories to read,” Nieman says. “We don’t know exactly what’s going on, but my belief is that the virus spreads throughout the body in a subclinical form and engages the immune system and makes the individual feel tired.”

    http://time.com/5167299/should-you-...utm_medium=social&xid=time_socialflow_twitter
     
  20. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    598
    Likes:
    787
    Germany
    I've been thinking about this comment again, and I think this is a very interesting idea if we look at the following:
    * Antivirals are ineffective in the treatment of mononucleosis, even though they are known to be effective against EBV, e.g. in EBV encephalitis (both Valtrex and Valcyte)
    * Mononucleosis can cause severe fatigue that persist for many months even though primary symptoms (fever etc.) have resolved
    * During that period, as far as I know there is no viremia detectable in the blood (EBV PCR)

    That's all true for CFS as well. So I am wondering:
    * Why are antivirals ineffective in the treatment of mono although they are effective in other conditions involving the same virus?
    * And why is there severe fatigue for months even though lab tests suggest there is no more virus in the blood?

    Dr Goldstein (whose reputation I can't really gauge) has reported that mononucleosis sometimes resolves very quickly if he administers Nitroglycerin. I have seen no studies which confirm this finding, but I have also seen no study which refute it, and such studies are usually done very quickly for most quackery claims of alternative medicine.

    Nitroglycerin is used as a powerful vasodilator and it crosses the blood-brain barrier. It would be conceivable that vasodilation has a positive effect in mono patients, because it helps immune cells reach all potential reservoirs and thus clear out the EBV virus. That would also explain why many people (including me) had limited success with calcium channel blockers, which are also vasodilators.

    At the moment, most investigators seem to look at possible autoimmunity. as a cause for CFS - or at least a subset of it - but I think the hypothesis that there is somehow an active infection going on without that showing in the blood should not be discarded at this point (again for a subset of patients).
     
    pattismith likes this.

See more popular forum discussions.

Share This Page