treatment with antibiotics

[notmyself]

i just find and article from a site called prohealth..I will extract the paragraphs wich capture my attention:


Mycoplasma, chlamydia, and ureaplasma are the smallest of free-living organisms. They are unlike all other all other bacteria because they have no cell walls and therefore must live inside cells. They are unlike viruses because they can live in cultures outside of cells and can be killed by certain antibiotics. However, they cannot be killed by most antibiotics, as most antibiotics work by damaging a bacteria’s cell wall. They can be killed by antibiotics such as tetracyclines or erythromycins that do not act on a cell wall.

If you feel sick and your doctor is unable to make a diagnosis because all laboratory tests and cultures fail to reveal a cause, you could be infected with one or more of these bacteria. The only way that you will be cured is for your doctor to suspect an infection with these germs and for you to take long-acting erythromycin or tetracyclines for several weeks, months or years.


They are the most common cause of venereal diseases and are a common cause of muscle and joint pains, burning in the stomach, a chronic cough, and chronic fatigue. They can cause transverse myelitis (paralysis of the spine); gall stones; a chronic sore throat; red itchy eyes, pain on looking at light and blindness; arthritis; brain and nerve damage with symptoms of lack of coordination, headaches and passing out; spotting between periods or uterine infections; kidney stones; testicular pain; asthma; heart attacks; strokes; cerebral palsy; premature birth; high blood pressure; nasal polyps; stuffy nose in newborns; chronic fatigue; belly pain; muscle pain; confusion; passing out and death; coughing; bloody diarrhea; and anal itching and bleeding.

Mycoplasma, chlamydia, and ureaplasma infections are extraordinary difficult to diagnose and treat. No dependable tests are available to most practicing physicians that will rule infections with these bacteria in or out, and most doctors will not prescribe antibiotics to patients unless they have results of a laboratory test that confirms a specific infection. If you feel sick and your doctor unable to make a diagnosis because all laboratory test and cultures fail to reveal a cause, you could be infected with mycoplasma, chlamydia, or ureaplasma and will be cured only by taking long-acting erythromycin or tetracyclines for many months.



I ,personally like the sound of the word ''cured'' in there

 

[Pen2]

@notmyself , Nice research. The word "cured" is an awesome word! Are you going to follow up on this with your doctor? Sounds like something worth bringing up to me.
I know that many of us have done antibiotic treatments. I personally have not taken those antibiotics but others may have. They are potent antibiotics.
Hope others respond

Thanks.

 

[notmyself]

@notmyself , Nice research. The word "cured" is an awesome word! Are you going to follow up on this with your doctor? Sounds like something worth bringing up to me.

Thanks.

I just need to find a good doctor first. but this can be a good lead

 

[A.B.]

If you feel sick and your doctor unable to make a diagnosis because all laboratory test and cultures fail to reveal a cause, you could be infected with mycoplasma, chlamydia, or ureaplasma and will be cured only by taking long-acting erythromycin or tetracyclines for many months.



I ,personally like the sound of the word ''cured'' in there

We all like the idea of a cure being within reach. That should be balanced with a dose of critical thinking however. What is the evidence behind these claims? The story is, these organisms are so difficult to detect, yet treatment with antibiotics over many months (which can have harmful long lasting side effects) will cure the patients. How does the authors know this?

 

[mrquasar]

No dependable tests are available to most practicing physicians that will rule infections with these bacteria in or out"

There are antibody-specific tests available (IgG, IgM) for these infections. I just recently got tested for Mycoplasma. Still waiting on the results.

and for you to take long-acting erythromycin or tetracyclines for several weeks, months or years

Taking antibiotics for a prolonged period carries its own serious risks, such as developing infections like C. dificile, which is incredibly difficult to treat. You'd be completely destroying your gut microbiome, and you'd need to supplement with probiotics. Plus from what I understand, as long as you're on the antibiotics and for many months afterwards, your gut microbiome will be radically altered, which can have all types of negative effects on your body. We're just starting to understand the full effects of the gut microbiome, so altering it so drastically without a concrete diagnosis might be a poor decision.

Just throwing that out there for you to consider. Get the antibody tests if you're really concerned you might have these infections.

Take care.

 

[notmyself]

For sure, first you need to be sure you have these infections, i don t understand aswell ,why the author said they are hard to diagnose ..

 

[Snowdrop]

Not everything that sounds 'sciency' is science. There is a massive quantity of information out there on the web. It can be too easy to focus on what we want to hear. Often the down side is never ever mentioned. And there can be a very bad downside to much of the medical advice being offered all over the web.

Think about what you have quoted and what evidence there is for going ahead with treatment.

Antibiotics aren't breath mints. They will kill bacteria in the gut and change the microbiome in ways that may not be beneficial. While antibiotics are life saving when needed, using them on speculation can make a situation worse. Some people have reported getting IBS and other gut issues after a course of antibiotics.

And the gut bacteria that do not get annihilated by the AB's will become more resistant should you need life saving AB's in the future you will require the stronger AB's.

These are things to consider. We all want to be well. You don't want to make your situation worse. Let reason guide your health decisions not your anxiety at being ill. Take your time -- digest the information you find and look for information that contradicts it. Then weigh the evidence and your personal situation.

 

[mrquasar]

I've learned the hard way that unless you have a concrete diagnosis (and perhaps sometimes even after you do), treatments are basically a crapshoot with a low chance of success and a moderate chance of lasting harm. In our realm of chronic complex illnesses, medicine is unfortunately woefully ill-equipped to treat or cure us. Medicine has done wonders for many other aspects of human health (infectious diseases, etc.), but for us it really doesn't have much to offer. And the diagnostic path for us is basically a never-ending litany of blood tests.

I wish I had more positive input to offer but that's my assessment of things.

For me, the most practical route currently is to pursue testing for a handful of conditions that are the most likely to be causing my symptoms, and also try a handful of supplements that are the safest and most likely to benefit those conditions.

Given my past experience, the likelihood of success isn't very high, but I simply don't have the money or patience to pursue the hundreds of other possible conditions and treatments.

 

[notmyself]

I've learned the hard way that unless you have a concrete diagnosis (and perhaps sometimes even after you do), treatments are basically a crapshoot with a low chance of success and a moderate chance of lasting harm. In our realm of chronic complex illnesses, medicine is unfortunately woefully ill-equipped to treat or cure us. Medicine has done wonders for many other aspects of human health (infectious diseases, etc.), but for us it really doesn't have much to offer. And the diagnostic path for us is basically a never-ending litany of blood tests.

I wish I had more positive input to offer but that's my assessment of things.[/QUOTE]


i understand ! it's so frustrating, but i'm less than a year sick so maybe i just didin t find the issue yet

 

[pattismith]

We still don't know if the improvment seen on antibiotic therapy of CFS/Fibromyalgia are a consequency of killing intracellular bacteria (spirochetes, chlamydiae, Mycoplasma, ureaplasma), or gut bacteria (gut microbiome, or Yersinia or other ), or lungs bacteria (microbiome, or Klebsella pneumoniae for example), or others....

But it is a fact that many patients improve on it.

I got rid of my spine pain when I took Azithromycin, but I also experimented high blood lactates and muscle pain on it.

It may be because of mitochondrial toxicity of Azithro, but it may also be a result of selective action on the gut microbiome that favor lactic acid bacterias...

I did another trial on Amoxicilline/clavulanic acid, and it made my blood lactates to go low and low!!

This is a kind of confirmation that the hyperlactatemia effect I had on azithro was associated to the gut effect...

but the efficiency of azithro on my pains may be also a result of this gut effect!

I stopped azithro after 4 months of pulsed treatment because my muscles were far too much painful (and fatigue was very bad), but my pains are now back (after 1 months and a half free of it)...
So I just started a protocol with Azithro + amox + clav Ac, all together three days a week + probiotics (free of D lactic acid)... Let's see if it works!

I know the risk on my gut microbiome, but any way, my gut microbiome is already bad for a long time, despite many diet trials, and I couldn't go any longer with my pains, so it is a good chance to run for me.

 

[edawg81]

We are so sick that it seems understandable to consider antimicrobial treatment, it makes some people sicker and some people better. MECFS can cause such severe symptoms, i think its understandable to want to try something, usually if there is some evidence of infection. LLMDs (ILADS) usually try to treat chronic illnesses (usually diagnosing chronic lyme) with antibiotics or supplements, this is at the very least controversial. The best thing you an do before trying antibiotics is to have a blood culture, PCR tests, and antibody panel that can show additional evidence of an infection AND to make sure to rule out other illnesses that could be causing MECFS like symptoms that have accepted treatments. Otherwise a LLMD would be willing to treat usually a clinical diagnosis (again this is controversial). I have heard just as many anecdotal stories of people getting better as getting worse on medication, some without direct evidence of an infection. MECFS is a tough situation to be in, I think the only thing we know for certain is more research is needed.

 

[Pen2]

We still don't know if the improvment seen on antibiotic therapy of CFS/Fibromyalgia are a consequency of killing intracellular bacteria (spirochetes, chlamydiae, Mycoplasma, ureaplasma), or gut bacteria (gut microbiome, or Yersinia or other ), or lungs bacteria (microbiome, or Klebsella pneumoniae for example), or others....

But it is a fact that many patients improve on it.

I got rid of my spine pain when I took Azithromycin, but I also experimented high blood lactates and muscle pain on it.

It may be because of mitochondrial toxicity of Azithro, but it may also be a result of selective action on the gut microbiome that favor lactic acid bacterias...

I did another trial on Amoxicilline/clavulanic acid, and it made my blood lactates to go low and low!!

This is a kind of confirmation that the hyperlactatemia effect I had on azithro was associated to the gut effect...

but the efficiency of azithro on my pains may be also a result of this gut effect!

I stopped azithro after 4 months of pulsed treatment because my muscles were far too much painful (and fatigue was very bad), but my pains are now back (after 1 months and a half free of it)...
So I just started a protocol with Azithro + amox + clav Ac, all together three days a week + probiotics (free of D lactic acid)... Let's see if it works!

I know the risk on my gut microbiome, but any way, my gut microbiome is already bad for a long time, despite many diet trials, and I couldn't go any longer with my pains, so it is a good chance to run for me.

There are alot reasons why taking antibiotics for long periods is risky. One, become insensitive and resistant to treatment. We know all about MRSA, that's one example.
We also have useful bacteria in us that we don't want to kill.

Tough subject isn't it?

 

[pattismith]

There are alot reasons why taking antibiotics for long periods is risky. One, become insensitive and resistant to treatment. We know all about MRSA, that's one example.
We also have useful bacteria in us that we don't want to kill.

Tough subject isn't it?

you are right, and I wouldn't take them if it hadn't successfully release me from all my axial pains,
which I couldn't live with any longer...
My grand-mother was very ill during most of her life, with axial pains and fatigue,
she was not able to raise her three children (my grand father took care of them),
and I promised to myself that I will not have the half life she had...

 

[Snowdrop]

I've learned the hard way that unless you have a concrete diagnosis (and perhaps sometimes even after you do), treatments are basically a crapshoot with a low chance of success and a moderate chance of lasting harm. In our realm of chronic complex illnesses, medicine is unfortunately woefully ill-equipped to treat or cure us. Medicine has done wonders for many other aspects of human health (infectious diseases, etc.), but for us it really doesn't have much to offer. And the diagnostic path for us is basically a never-ending litany of blood tests.

Many make excellent points. We are desperate. We want to try things to get better. Not all things we try though are equal. AB's are powerful and effective drugs. It's different to take them on speculation than say trying some magnesium and CoQ10 or going for acupuncture.

But the point I really wanted to put out there is that this whole reason of our desperation and N=1 experimenting is why we need to (it's so important) for us to band together. As a group of sick people we are much stronger to work for a common good-- fighting for real treatment that is known to work and that can be prescribed by our Dr after having a proper diagnosis--just like other illness groups have as a matter of expectation and as is our right.

It takes a lot of energy to individually research and try things. And we are at times frightened for our future. This is why it's important to consider spending some of our time and energy on knocking down that wall built by BPS PACE trial psychiatrists and encourage journalists to write stories that deal with narratives from the patient/biomedical side, to contact our elected gov't officials, to encourage demonstrations by sending our shoes for millions missing, using social media.

There are so many stories here now. We share similar experiences. Even for those who have been helped by some therapy -- most are still ill. And the few that have been lucky to get better health without knowing how or if a treatment might work are lucky because it is a crap shoot.