This study by Dr. De Meirleir links CFS and activity of streptococcal bacteria (in the gut):
https://www.ncbi.nlm.nih.gov/pubmed/19567398
https://www.ncbi.nlm.nih.gov/pubmed/19567398
Antistreptolysin O around 300 for 1 year --- antibiotics warranted?
- Thread starter Wonkmonk
- Start date
"Bacteria found in the small intestines of mice and humans can travel to other organs and trigger an autoimmune response, according to a new study. The researchers also found that the autoimmune reaction can be suppressed with an antibiotic."
https://www.sciencedaily.com/releases/2018/03/180308143102.htm
https://www.sciencedaily.com/releases/2018/03/180308143102.htm
"[A] Yale research team focused on Enterococcus gallinarum, a bacterium they discovered is able to spontaneously "translocate" outside of the gut to lymph nodes, the liver, and spleen. In models of genetically susceptible mice, the researchers observed that in tissues outside the gut, E. gallinarum initiated the production of auto-antibodies and inflammation -- hallmarks of the autoimmune response [and possibly CFS]. [...] When we blocked the pathway leading to inflammation, we could reverse the effect of this bug on autoimmunity."
From what I see at a first glance at Google, Ampicillin/sulbactam is effective against Enterococcus gallinarum. It is broad spectrum, so it may also be effective against other bacteria who behave like E. gallinarum.
From what I see at a first glance at Google, Ampicillin/sulbactam is effective against Enterococcus gallinarum. It is broad spectrum, so it may also be effective against other bacteria who behave like E. gallinarum.
SunMoonsStars
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Interesting thread.
On my list of infections so many high viruses and strepozyme says positive and is 200 when less than 100 is negative.
Nobody says a word about that and seems to be a side note.
Before cfids really hit hard years ago I had chronic strep throat for a good year even reoccurring every few weeks and they could not control it and wanted to do throat surgery. Crazy. I ran out of the hospital when my gut said this doesn’t seem right to me. It ended up calming down but the viruses and valley fever and others hit hard after that making me bedridden and lost normal life ever since.
Ironically at some point I showed Lyme as well. Some friends use bicillin injections 2 x a week with success. I tried that for a few months and really didn’t notice much. But my mind says there is a bacterial chronic burden even if not causing symptoms. My doc said Valley Fever also stays with you forever.
I did IV Ozone and Ozone at home and did feel better until I could keep it up with funds and veins holding up. That gains seemed to quickly be lost over the winter. Every dang winter I swear is regression time. I wish I could live winters in a country that has summer in our winter months.
I haven’t had the other test you describe.
What’s your take on strepozyme test ?
My HHV6 is 1:1280. Ebv IGM constant and CMV 19.6 with 1.1 or less on my Labs interpretation as negative.
Parvovirus and Adnovirus etc.
It’s viruses causing symptoms primarily.
Speaking of Dr Golstein I used cimetidine a year straight and it was like a micacle. But I grew tolerant and titers never reduced so it was a immunity cruch up just like ivig I’m now on that also controls major symptoms.
I think our immune systems are dusfunctioning but nobody really has identified exactly how or why or what to do. I also have zero auto immunity and not even inflammatory markers.
A few doctors were saying it’s impossible with all my symptoms and I even had acute horrid symptoms during an acute attack. But they dug and dig and hematologist too and no markers for inflammation were high. Even while in a lot of pain too.
It’s a perplexing condition.
On my list of infections so many high viruses and strepozyme says positive and is 200 when less than 100 is negative.
Nobody says a word about that and seems to be a side note.
Before cfids really hit hard years ago I had chronic strep throat for a good year even reoccurring every few weeks and they could not control it and wanted to do throat surgery. Crazy. I ran out of the hospital when my gut said this doesn’t seem right to me. It ended up calming down but the viruses and valley fever and others hit hard after that making me bedridden and lost normal life ever since.
Ironically at some point I showed Lyme as well. Some friends use bicillin injections 2 x a week with success. I tried that for a few months and really didn’t notice much. But my mind says there is a bacterial chronic burden even if not causing symptoms. My doc said Valley Fever also stays with you forever.
I did IV Ozone and Ozone at home and did feel better until I could keep it up with funds and veins holding up. That gains seemed to quickly be lost over the winter. Every dang winter I swear is regression time. I wish I could live winters in a country that has summer in our winter months.
I haven’t had the other test you describe.
What’s your take on strepozyme test ?
My HHV6 is 1:1280. Ebv IGM constant and CMV 19.6 with 1.1 or less on my Labs interpretation as negative.
Parvovirus and Adnovirus etc.
It’s viruses causing symptoms primarily.
Speaking of Dr Golstein I used cimetidine a year straight and it was like a micacle. But I grew tolerant and titers never reduced so it was a immunity cruch up just like ivig I’m now on that also controls major symptoms.
I think our immune systems are dusfunctioning but nobody really has identified exactly how or why or what to do. I also have zero auto immunity and not even inflammatory markers.
A few doctors were saying it’s impossible with all my symptoms and I even had acute horrid symptoms during an acute attack. But they dug and dig and hematologist too and no markers for inflammation were high. Even while in a lot of pain too.
It’s a perplexing condition.
SunMoonsStars
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@Wonkmonk
What is your take on mycoplasma and chlamydia pneumonia tests ?
I don’t know how to intretpret these
Mycoplasma P IGG 2.39
Greater or equal 1.1 Postive
Chlamydia P 1:64
Greater that 1:16 Positive
Strepyzyme reflexed 1:200 Positive
Less than 1:100 negative
HHV6 IGG 1:1280
Less than 1:80 Negative
EBV 4 Titers all Positive
IGM EA NA EBNA
CMV IGG 19.6
Greater than 1.1 Positive
Parvo IGG 7.6
Greater than 1.1 Postive
Adenovirus 1:8 Detected
Less than 1:8 - Not Detected.
Lyme IGG Negatuve IGM Positve
Your view in these and if the bacterial infection labs are actual concerns vs past infections.
Anyone who knows how to read the labs I appreciate any help.
Thanks much.
What is your take on mycoplasma and chlamydia pneumonia tests ?
I don’t know how to intretpret these
Mycoplasma P IGG 2.39
Greater or equal 1.1 Postive
Chlamydia P 1:64
Greater that 1:16 Positive
Strepyzyme reflexed 1:200 Positive
Less than 1:100 negative
HHV6 IGG 1:1280
Less than 1:80 Negative
EBV 4 Titers all Positive
IGM EA NA EBNA
CMV IGG 19.6
Greater than 1.1 Positive
Parvo IGG 7.6
Greater than 1.1 Postive
Adenovirus 1:8 Detected
Less than 1:8 - Not Detected.
Lyme IGG Negatuve IGM Positve
Your view in these and if the bacterial infection labs are actual concerns vs past infections.
Anyone who knows how to read the labs I appreciate any help.
Thanks much.
I am absolutely not sure about this, so please check with a health professional, but as far as I know, all titers for the bacteria should be zero and if they are elevated, you have some degree of bacterial activity in the body. It's not like the herpes virus, for which - if infected - you get a latent infection with a "normal" low level of IgG titer. I think the bacterial titers should be negative, and it seems Mycoplasma, Chlamydia and streptococcus are positive. There may also be active infection with HHV6 and EBV, based on the titers (depending what "high" means for EBV).
But please check other (informed) opinions, especially on the bacteria issue.
But please check other (informed) opinions, especially on the bacteria issue.
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SunMoonsStars
Senior Member
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@Wonkmonk
Thanks. I will keep asking including various docs. Some blow it off sadly.
Yes ebv is high IGM is positive and all four titers are actually.
Thanks again.
Thanks. I will keep asking including various docs. Some blow it off sadly.
Yes ebv is high IGM is positive and all four titers are actually.
Thanks again.
Gingergrrl
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Sorry if you already said it and I missed it, but did you re-start the antibiotics? If so, how is it going and did the rash return or get worse?
Gingergrrl
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That's a bummer and hoping your new plan works and you do not get the rash again.
We decided to switch to intravenous erythromycin, which is a non-penicillin antibiotic, so it can't trigger the same rash, although allergic reaction to erythromycin is possible, but it would be a different type of allergic reaction and it is a rare side effect.
I plan to do a 10 day IV course.
I plan to do a 10 day IV course.
Had the first erythromycin infusion yesterday (1g). No adverse effects, but at the end, the venous catheter got congested, which resulted in extravasation. Luckily the amount was small and erythromycin is only a minor irritant. Pain was minimal and it seems to be ok again. But I have to monitor the catheter closely going forward.
The problem is, erythromycin should be given by very slow infusion in 60-120 minutes minimum, ideally even slower, so you have to look at it all the time.
We plan to do 4 infusions a day, each 0.5g in 500ml water for injection. If well tolerated, we might go up to 4 infusions, each 1g, which is the maximum daily amount according to the manufacturer.
The problem is, erythromycin should be given by very slow infusion in 60-120 minutes minimum, ideally even slower, so you have to look at it all the time.
We plan to do 4 infusions a day, each 0.5g in 500ml water for injection. If well tolerated, we might go up to 4 infusions, each 1g, which is the maximum daily amount according to the manufacturer.
IV Erythromycin is actually as a continuous infusion (over the whole day or at least many hours). But it is possible to do 3-4 intermittent infusions as well (each over 30-60 minutes).
I have now opted for the intermittent infusion. First, it's more convenient because you can disconnect th infusion for most of the day. But more importantly, erythromycin is mainly bacteriostatic and only bactericidal in higher concentrations. I hope I can reach a bactericidal concentration at least for some time with the intermittent infusions.
Now having the 3rd infusion today. All were well-tolerated so far.
I have now opted for the intermittent infusion. First, it's more convenient because you can disconnect th infusion for most of the day. But more importantly, erythromycin is mainly bacteriostatic and only bactericidal in higher concentrations. I hope I can reach a bactericidal concentration at least for some time with the intermittent infusions.
Now having the 3rd infusion today. All were well-tolerated so far.
Gingergrrl
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@Wonkmonk Thanks for keeping us posted and I am following your thread and am curious how the antibiotics ultimately affect your symptoms and ASO titers. I am hoping the rash does not return and you will tolerate them well.
It's quite interesting. Some minor symptoms indeed seem to get better (e.g. neck pain), but what's striking is that my heat intolerance has almost disappeared. That started with the first antibiotics course a month ago and it seems to continue now. In fact, if anything, I am starting to develop some cold intolerance, which I think might be kind of a normalization, because I was rather feeling cold a lot before my CFS started.
My mom just entered my room, which has 22.5 degrees and she said it's too warm, but for me it even feels a bit too cold.
My appetite has also decreased starting with the first course of antibiotics. I used to be a rather slim person pre-CFS. Since CFS started, I've felt hungry all the time and I gained 35 lbs and became overweight. So having a lower appetite is in my view also a step 'back to normal.
What I can definitely say is that the antibiotics changed something. But they did not substantially improve the main symptoms, i.e. fatigue, brain fog, heart palpitation, overall diminished mental capacity. Discomfort in the kidney area also hasn't improved much.
I should also note that no symptom has worsened. Overall I would say the antibiotics made me mildly better, but not much.
I think this response would be consistent with there being some kind of bacterial co-infection that produces or exacerbates some of the symptoms, but clearly is not the cause of the CFS itself.
Just found this: Antibiotics use can interfere with immune system function and reduce ability to fight off infections.
https://newatlas.com/antibiotics-counteract-immune-system/52457/
It was shown for Ciprofloxacin.
I used Ampicillin/sulbactam and more recently Erythromycin and I am pretty sure I benefitted somewhat from the treatment.
We are now switching to Benzylpenicillin to see if it also causes a rash or if that reaction was specific to Ampicillin. Erythromycin (2-3 g a day for 9 days) was fairly well tolerated, with just a few relatively minor adverse effects (discoloration of the tongue, light headache, palpitations).
https://newatlas.com/antibiotics-counteract-immune-system/52457/
It was shown for Ciprofloxacin.
I used Ampicillin/sulbactam and more recently Erythromycin and I am pretty sure I benefitted somewhat from the treatment.
We are now switching to Benzylpenicillin to see if it also causes a rash or if that reaction was specific to Ampicillin. Erythromycin (2-3 g a day for 9 days) was fairly well tolerated, with just a few relatively minor adverse effects (discoloration of the tongue, light headache, palpitations).