Is CFS/ME an unidentified VIRUS?

[Dr.Patient]

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.

Were you able to tell if the symptom return was from doxy or cipro, have you used them separately or together, thanks.

 

[5150]

Were you able to tell if the symptom return was from doxy or cipro, have you used them separately or together, thanks.

I used them separately. The doxy was used more long-term. I won't use Cipro again...hearing bad things for us about it.
However, the doxycycline is a fine short-term helper. Just that all symptoms returned , no matter.

 

[msf]

No offence, Tiredofbeingsick, but the fact that you attributed your improvement on antibiotics to a viral infection shows how pervasive the idea of ME being caused by a virus is. I'm not saying that this wasn't a legitimate theory, but I do think it has had an averse effect on ME research.

 

[msf]

Adverse, sorry.

 

[Bansaw]

II was put on Clindamycin after I had the most rare side effects of Amoxicilin

The antibiotics might treat a bacterial infection that causes the CFS. I went to see Dr.Lapp in Charlotte, NC and he said CFS was caused by infection+severe stress. I myself contracted Typhus which has CFS as an outcome, and I also suffered from post traumatic stress. I took a whole lot of antibiotics and did feel somewhat better but my body had been fighting Typhus for 6 years before I discovered it.
And the antibiotics (I took a long regime) messed up my gut I think, so I am about fixing that.
The thing with bacterial infection though - they can be hard to treat since when the bacterica is in its embryonic stage it is protected from attack and survives the antibiotic. Thus the infection is cleared out by the drug, but you get reinfected from the embryonic bacteria when its fully grown.
For this my doc had me on 9 cycles of antibiotics, 1 week on, 3 weeks off, (thats about 9 months, ugh!)
I'm convinced it got rid of the infection, but messed other areas up (eg: gut) :s

 

[Chriswolf]

CFS is as I understand a symptom based diagnosis, which means any number of things could be responsible for that cluster of symptoms.

I developed a rip-snorter case of mono in 2011, I felt like I was going to die. A year afterward I crashed again pretty hard, I'm pretty sure it flares up and wrecks me to varying degrees depending on how my body can manage it and who I have been exposed to.

I do not manage being around large groups of people in close quarters for any measure of time very well, especially venues such as conventions or concerts. I have suffered relapses of mono type symptoms after being at such venues before.

I would safely assume that many of us on this forum share similar symptomatic clusters with different origins.

I've been fighting CFS symptoms for some time before that, however my condition has only gotten worse since catching and being diagnosed as having mono in 2011.

 

[Violeta]

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!

@Tired of being sick, Maybe try something like lomatium or pau d'arco that have both antibacterial and antiviral ability.

Antibiotics might kill bacteria for a season, but we know they ruin your immune system and if your immune system is damaged, vuruses will run rampant.

Something to build up your immune system such as echinacea or colostrum can only help, too.

 

[xrayspex]

hey tired of being sick
I just picked up a short course (well 10 days worth) for pain post root canal
am afraid to try it because dont want to mess gut up but am curious if it will help pain

z-max for pneumonia in the winter reduced my neck and body pain significantly as a side effect
I am prone to chronic pain either from neck injury or ME/cfs/AI type issue

curious on yr thoughts on clindaymycin today
i havent used it before i dont think unless when was a kid
amoxicillin my body doesnt like it gives me more pain so they gave me this

 

[Tired of being sick]

curious on yr thoughts on clindaymycin today

It significantly helped my "Inflammation" pain..

And I'm on Fentanyl

 

[xrayspex]

TBoS did it mess your gut up and if so for how long? didnt you write somewhere that you did feel worse when you went off it tho? was it worth it in the long haul to take it and why if so?

thanks!

 

[knackers323]

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.

hi @Hip does VanElzakker have a theory on what causes this? there are a couple of other drs and researchers saying the same thing.also are you aware of any other sustances that will have a similar effect?

@Bansaw did Dr Lapp say what role the stress plays in developing cfs, in regards to his theory?

clarithromycin gave me the same result as @Tired of being sick

 

[Hip]

hi @Hip does VanElzakker have a theory on what causes this? there are a couple of other drs and researchers saying the same thing.also are you aware of any other sustances that will have a similar effect?

Just to clarify: is your question (1) how IL-1beta, TNF-alpha and IL-6 might cause ME/CFS symptoms, and (2) are there any compounds that inhibit these cytokines?

 

[knackers323]

sorry mate, not real clear.
no, what causes the inflammatory cytokines to begin with? million dollar question i know, but does he have a theory?

and yeah, is there anything else that would inhibit these?

big doses of pycnogenol helped me, so i think this could be an option

 

[Hip]

causes the inflammatory cytokines to begin with?

Many infectious pathogens will trigger these cytokines, so there is no mystery as to how they arise. Michael VanElzakker thinks that a chronic infection in ME/CFS patients may be constantly inducing the release of these cytokines, and since these cytokines can then trigger sickness behavior, this might explain how many ME/CFS symptoms arise (search this forum for the "vagus nerve infection hypothesis" for more info).

is there anything else that would inhibit these?

Yes, lots of supplements inhibit them. Vinpocetine for example inhibits TNF-alpha.

 

[knackers323]

have you tried taking a range of supps to counter this?

 

[Hip]

have you tried taking a range of supps to counter this?

Yes I have, and in terms of possibly good results, I found that the antibiotic erythromycin 800 mg daily plus ampicillin 500 mg daily may have reduced my PEM symptoms.

The macrolides roxithromycin, erythromycin, clarithromycin and azithromycin have been shown to inhibit IL-1β, TNF-α and IL-6. Ref: 1 (full text).

And amoxicillin significantly decreases IL-6 plasma levels by the 7th day of therapy. Ref: 1



Vinpocetine 10 mg I have taken every day for several years now. It also increases brain blood flow.

 

[Tired of being sick]

TBoS did it mess your gut up and if so for how long?

No,Clindamycin helped all my symptoms including induced reflux,hiatal hernia bloating
and my diverticulitis/constipation....