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Is CFS/ME an unidentified VIRUS?

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
I recently was put on a course of antibiotics for a tooth root infection I had not one
clue/symptom that I even had this infection until a mouth x-ray during a dental
cleaning..

I was put on Clindamycin after I had the most rare side effects of Amoxicilin
which were tightness in chest/dark urine/urine retention..I had doctors
arguing with me trying to tell me that those side effects do not exist!
I then told them that when it comes to me they need to throw out everything they were taught
and improvise since I am an absolute freak of human nature..
So as soon as I stopped the Amoxicillion(against the doctors orders) the tightness in chest/dark urine/urine retention stopped within 24 hours..



The Clindamycine was a godsend for my CFS/ME..
However I did not want to mention anything until the clindamycin cycle was over.

While I was on Clindamycin it significantly reduced all of my CFS/POTS symptoms to where
I did not need to take my medications such as tramadol/gabapentin/andro gel/
Amitriptyline/Midodrin etc..

I felt as if I were cured!!

Soon as I was done with this cycle of Clindamycin ALL of my symptoms came back 10
fold.it seems they are back worse than before the antibiotics..
It also could feel worse because I never had this kind of positive treatment before.
Meaning when symptoms came back all at once it was an overload..

I am afraid to mention this to my doctors since they will think I'm insane..

There is one thing I do know...

CFS/ME is definitely an unknown debilitating VIRUS!

at least with my experience!
 

Aurator

Senior Member
Messages
625
The illness might be caused by a virus. We just don't know. I suspect we'll get to the bottom of things more quickly if we start from an assumption that it might be a virus rather than the assumption that it is.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Antiobotics don't help with a virus, for that you need antivirals. Its very likely its not caused by any known acute viral infection. That is not to say that an unkown virus (unlikely) or a non-cytopathic viral infection could not be the cause. However the current focus is on changes to the immune system that induce symptoms. A virus can trigger that but the changes are what make us sick in this hypothesis.

Quite a few bacterial infections are also associated with ME, CFS or now SEID. Sometimes these go undiagnosed. Antibiotics might help with those.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I've been on roxi for about 2 weeks and am not noticing much of anything.

If you find it helps you then find someone who will support you with an rx or you can consider getting some yourself.
 

SOC

Senior Member
Messages
7,849
A "tooth root infection" is almost certainly a bacterial infection, not a virus. If it was treated with antibiotics, it seems completely unlikely that is was a virus. So concluding that ME/CFS is caused by an unidentified virus because antibiotics improved your condition temporarily seems a bit of a stretch.

That isn't to say that viruses, or bacteria, or other pathogens aren't the cause or a major contributing factor in the symptomology of ME/CFS.
 

5150

Senior Member
Messages
360
Many of my symptoms "go away" if I'm on abx. As soon as the abx course is finished, about 3 days later I start to get all the symptoms back. I have used mostly Doxycyline & Cipro. I am in horrible shape now, my gut is a wreck. I want to do a fecal transplant. . . anybody done this with success? where? how much $$ ? thank you for all help.
 

zzz

Senior Member
Messages
675
Location
Oregon
The Clindamycine was a godsend for my CFS/ME..
However I did not want to mention anything until the clindamycin cycle was over.

While I was on Clindamycin it significantly reduced all of my CFS/POTS symptoms to where
I did not need to take my medications such as tramadol/gabapentin/andro gel/
Amitriptyline/Midodrin etc..

I felt as if I were cured!!

Soon as I was done with this cycle of Clindamycin ALL of my symptoms came back 10
fold.it seems they are back worse than before the antibiotics..
It also could feel worse because I never had this kind of positive treatment before.
Meaning when symptoms came back all at once it was an overload..

I don't know if it's true of lincosamides like clindamyacin, but macrolide abx are known to have immunomodulatory and anti-inflammatory effects beyond their anti-microbial effects. I've seen a number of other people report symptom improvement while taking abx.

Many of my symptoms "go away" if I'm on abx. As soon as the abx course is finished, about 3 days later I start to get all the symptoms back.
On page 220 of Tuning the Brain, Dr. Jay Goldstein states, "Almost all antibiotics appear to have psychotropic functions." He then spends the next several pages of the book describing what these are for many different antibiotics, although he does not mention clindamycin.

He does mention, though, that many of these antibiotics can relieve all ME/CFS symptoms in some people, just like his other treatments. Any given treatment, especially the antibiotics, only work for a small percentage of people, but for these people they can sometimes provide complete or nearly complete symptomatic remission. Their effect in this case has nothing to do with any bacterial infection, although they may be eradicating a bacterial infection at the same time.

For those people who had such dramatic positive reactions, Dr. Goldstein would continue the antibiotic, even in the absence of any infection, because the large-scale positive results had nothing to do with the presence or lack of infection. If you want to try to educate your doctor in this aspect of Dr. Goldstein's theories, you might want to show him this section in Tuning the Brain. A complete understanding of his theories and their application would require reading this book and its predecessor, Betrayal by the Brain. Both books can be found at Amazon.com. You might also find the PR thread Dr Jay Goldstein's Instant Remission ME/CFS Treatments very relevant.
I have used mostly Doxycyline & Cipro.

Be very careful with Cipro. Like all fluoroquinolones, it can have extremely serious and permanent side effects. I don't think it would be suitable for long term usage. From what I have seen, I wouldn't use any of the fluoroquinolones for anything except in an extreme emergency where no alternative was available.
I want to do a fecal transplant. . . anybody done this with success? where? how much $$ ? thank you for all help.

Based on reports here on PR, the success rate for this treatment is rather low, and success tends to be temporary.
 
Last edited:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I too are wondering if you could have one of the tick given diseases this helped....

Sounds like you need more testing done to try to figure this out. As others said, antibacterials do not help viruses at all.
 

barbc56

Senior Member
Messages
3,657
Antibiotics reduce inflammation. Have you had blood tests for this? If that is the reason antibiotics make you feel better you may need another type of medication.

I have no idea if this pertains to you or not. But as others have noted there could be a lot of reasons why this is happening.

Have you had a complete physical? That might be a start.

Good luck.

Barb
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
All I know is that Clindamycin helped drastically with ALL of my Neurological/Cognitive issues,
ADD,Motor Disturbances,Overload phenomena,Immune Dysfunction,Sleep Dysfunction,
Fibromyalgia/CPS,Post-Exertional Malaise and Fatigue,POTS,Autonomic Manifestations,
Orthostatic Intolerance,Other autonomic manifestations,Neuroendocrine Manifestations
and the 70+ symptoms these conditions cause..

I am not worried about whether it is a virus or not all as I know that just Clindamycin
"all by itself" has dramatically relieved all of the above better than
Gabapentin,Fentanyl,Tramadol,Diclofenac,Claritin,Flonaise,Midodrin,Adderall,
Andro Gel, B12,D3,and magniesium COMBINED!

AS for "Tests"

I have had everything under the sun done

And my diagnoses are in my signature, plain to see, as always
 

Hip

Senior Member
Messages
17,820
If the improvements in symptoms occurred within a day or two of starting clindamycin, then it's unlikely to be the antibacterial effects of this drug that helped you, because these take longer to manifest.

And since the improvements disappeared as soon as you stopped this antibiotic, this shows that it could not have been due to an antibacterial effect, because it would take a while for the killed bacteria to regrow.


A more likely explanation for the benefits you experienced from clindamycin would be this drug's anti-inflammatory effects. This study on acne vulgaris shows that clindamycin inhibits the inflammatory cytokines IL-1beta, TNF-alpha and IL-6. All three of these cytokines are classes as sickness behavior cytokines, which Michael VanElzakker posits are causing the symptoms of ME/CFS.
 

cb2

Senior Member
Messages
384
how long were you on the Clindamycin? that sounds promising and seems to possibly give you good clues as to start looking for bacterial infections that may be causing some of your condition. some dr' s believe Chlamydia pneumoniae and microplasma may cause hosts of issues..
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
@Hip now that makes pretty good sense.

Since I have always felt my encyclopedia of symptoms at their worst
when they start at my brain stem/cervical spine area then radiating throughout my entire body..

The more inflamed my brain stem/cervical spine area "FEELS".
the worse my symptoms and diagnoses become..
 

Hip

Senior Member
Messages
17,820
@Tired of being sick
Have you ever noticed the same improvements from other antibiotics? Quite a few antibiotics have anti-inflammatory effects.

This study found that the macrolide antibiotics roxithromycin, erythromycin, clarithromycin and azithromycin also inhibit IL-1β, TNF-α, IL-6 (in LPS-stimulated J774 macrophages). NOTE: Roxithromycin is the only macrolide antibiotic that crosses the blood brain barrier.

Azithromycin is of course a known treatment for ME/CFS (see this study).


I while ago I was taking erythromycin for a suspected kidney infection, and I noticed that while I was taking it, my PEM seemed much reduced. Of course I need to repeat this again a few times, to check that this wasn't just a coincidence.