CFS Mycoplasma Doxycycline

[heapsreal]

There's been a couple of threads on the above about antibiotics and bacterial infections in cfs so thought I'd post this.

Abstract
Chronic fatigue syndrome (CFS) and fibromyalgia syndrome (FMS) are characterised by a lack of consistent laboratory and clinical abnormalities. Although they are distinguishable as separate syndromes based on established criteria, a great number of patients are diagnosed with both. In studies using polymerase chain reaction methods, mycoplasma blood infection has been detected in about 50% of patients with CFS and/or FMS, including patients with Gulf War illnesses and symptoms that overlap with one or both syndromes. Such infection is detected in only about 10% of healthy individuals, significantly less than in patients. Most patients with CFS/FMS who have mycoplasma infection appear to recover and reach their pre-illness state after long-term antibiotic therapy with doxycycline, and the infection can not be detected after recovery. By means of causation and therapy, mycoplasma blood infection may permit a further subclassification of CFS and FMS. It is not clear whether mycoplasmas are associated with CFS/FMS as causal agents, cofactors, or opportunistic infections in patients with immune disturbances. Whether mycoplasma infection can be detected in about 50% of all patient populations with CFS and/or FMS is yet to be determined.
https://pubmed.ncbi.nlm.nih.gov/12879275/

 

[heapsreal]

My personal experience, I've found even though I'm on antivirals, I may go through a prolonged period of fatigue which I respond to antibiotics, so I assume one of the many bacterial infections commonly found in cfs might be reactivating.

Testing for these infections aren't accurate. Looking at this study shows that mycoplasma is found in 50% of pts with cfs and doxy is the recommended treatment.

Doxy is also effect for several other possible common bacterial infections in cfs such as chlamydia pneumonia as well as lyme disease and its coinfections, although with lyme disease usually a combination of antibiotics is used.

I don't think its a cure for most but I do find it does help me improve alot, especially especially headaches, post nasal drip and fatigue. Which could also be sinusitis but recent mri shows it was clear.

As I mentioned in another thread, I'm also taking Serrapeptase which helps break up bacterial biofilms so your immune system and or antibiotics can kill the bacteria more effectively.

 

[w john martin]

The detection of mycoplasma sequences in CFS patients can be due to their incorporation into stealth adapted viruses. This is explained in an article posted at https://www.biorxiv.org/content/10.1101/2022.10.11.511846v2

 

[heapsreal]

Interesting video to go with this thread. It's seems quite possible that those who know they have say ebv reactivating but not responding to antivirals, that it's possible that mycoplasma is still reactivation keeping one sick and suppressing their immune system.

Also makes me wonder if one clears the initial triggering infection that mycoplasma, that was at a low level being controlled by the immune system, is no out of control and suppressing the immune system.

Could this be going on in long covid?? Has there been an studies done on long covid pts to see how many have mycoplasma? Supposedly the general population 10% have mycoplasma but amongst the fatiguing illnesses like cfsme, fibro, ms and other neurological illnesses the percentage is atleast 50%.

I think it was an old Dr Nicolson study that showed the longer one was ill the more one accumulated infections. So it makes you wonder if someone has active ebv and doesn't respond to antivirals, maybe they should also be on a couple of broad spectrum antibiotics??? Maybe the reason why ampligen works so well is that it improved the immune system significantly enough that it could fight of several infections at once

 

[Tsukareta]

The paper you posted is from 2003 so pretty old, whether the topic has been revisited since then and why not is an interesting question, I have heard of these mycoplasma things recently but I don't know a lot about it, I think it said it can infect the lungs ? I spoke to a doctor this week and he thinks I have have H Pylori infection ( rather than Candida or SIBO ), so another chronic bacterial infection, but not the original cause of my CFS.

 

[Jyoti]

The paper you posted is from 2003 so pretty old, whether the topic has been revisited since then and why not is an interesting question,

I am curious about this as well. For some reason there was fairly decent ripple of scientific interest in chronic mycoplasma and chlamydia pneumoniae infection as drivers of a number of serious conditions (artherosclerosis, lung cancer, MS, and to a lesser extent, ME/CFS) which from what I can tell dropped off in the early twenty-teens. I wonder why? I saw a paper from about 6 years ago by K Chemali (a prominent dysautonomia specialist) linking (not necessarily causally, but linking none-the-less) POTS and mycoplasma. I also found this on a Sjogren's Facebook page:

Sjögren's Foundation​

November 23, 2022 ·
https://www.facebook.com/SjogrensFo...qED93PDpuPuN8KJHRBg68XBsMUfIMIs&__tn__=,O,P-R
The Sjögren's Foundation is excited to share that Dr. Kamal Chémali has been selected as the awardee of our recent call for proposals to study Sjögren’s and dysautonomia!
Dr. Chémali and his team will investigate whether mycoplasma pneumoniae, a common respiratory pathogen, could, through an autoimmune mechanism, contribute to the development of an autoimmune disease, an autonomic small-fiber neuropathy, and POTS. Preliminary analyses found an elevation of mycoplasma pneumonia titers in most individuals with neuropathic-POTS associated with Sjögren’s, and, to a lesser extent, other autoimmune diseases.
Proving this connection would encourage clinicians to look for Sjögren’s and other autoimmune diseases when mycoplasma pneumonia is present in neuropathic POTS and lead to effective treatment with immune modulation.
The Foundation is currently accepting research grant applications until February 1 on work to investigate the cause, prevention, detection, treatment and cure for Sjögren’s.
For more information on Research Grants click the link below:
https://www.sjogrens.org/researchers.../research-grants


I believe H Pylori is a pretty easy infection to defeat, so I hope it goes smoothly for you @Tsukareta. Be so nice not to have that agony ongoing!

 

[Tsukareta]

I am curious about this as well. For some reason there was fairly decent ripple of scientific interest in chronic mycoplasma and chlamydia pneumoniae infection as drivers of a number of serious conditions (artherosclerosis, lung cancer, MS, and to a lesser extent, ME/CFS) which from what I can tell dropped off in the early twenty-teens. I wonder why? I saw a paper from about 6 years ago by K Chemali (a prominent dysautonomia specialist) linking (not necessarily causally, but linking none-the-less) POTS and mycoplasma. I also found this on a Sjogren's Facebook page:

Sjögren's Foundation​

November 23, 2022 ·
https://www.facebook.com/SjogrensFoundation/posts/pfbid02uk3p9wQAVdUzcCAaJcmzN7uAf8HdjhGGUA6wzLtmvHCsDbcsF6o6jkam3QvGLYQdl?__cft__[0]=AZXUD7rHx0LLVEsw-5Q9WwlnOgTylD9cqICaUBbfnTDW4QOc3P9rNO89NT_yeyQCWwmORd4yjpsIFWhG7Wkwy5YyNfisoS7k8S84qED93PDpuPuN8KJHRBg68XBsMUfIMIs&__tn__=,O,P-R
The Sjögren's Foundation is excited to share that Dr. Kamal Chémali has been selected as the awardee of our recent call for proposals to study Sjögren’s and dysautonomia!
Dr. Chémali and his team will investigate whether mycoplasma pneumoniae, a common respiratory pathogen, could, through an autoimmune mechanism, contribute to the development of an autoimmune disease, an autonomic small-fiber neuropathy, and POTS. Preliminary analyses found an elevation of mycoplasma pneumonia titers in most individuals with neuropathic-POTS associated with Sjögren’s, and, to a lesser extent, other autoimmune diseases.
Proving this connection would encourage clinicians to look for Sjögren’s and other autoimmune diseases when mycoplasma pneumonia is present in neuropathic POTS and lead to effective treatment with immune modulation.
The Foundation is currently accepting research grant applications until February 1 on work to investigate the cause, prevention, detection, treatment and cure for Sjögren’s.
For more information on Research Grants click the link below:
https://www.sjogrens.org/researchers.../research-grants


I believe H Pylori is a pretty easy infection to defeat, so I hope it goes smoothly for you @Tsukareta. Be so nice not to have that agony ongoing!

I don't know for sure if I have it yet, apparently about 40 to 50% of people have it but its not always causing disease, some of the tests are pretty cheap though its a lateral flow test like the coronavirus ones so I am going to try that as soon as possible. Something caused me to develop a couple of food allergies, milk intolerance and general sensitivity to carbs / sugar, plus high levels of hydrogen gas that seem to come and go at random. Also at the same time as the sudden onset of food issues, MCS and mold sensitivity which are perhaps the worst parts of it.

I found something on this mycoplasma topic which might be interesting to read , this one is from 2019
https://www.scirp.org/journal/paperinformation.aspx?paperid=95720

 

[heapsreal]

The paper you posted is from 2003 so pretty old, whether the topic has been revisited since then and why not is an interesting question, I have heard of these mycoplasma things recently but I don't know a lot about it, I think it said it can infect the lungs ? I spoke to a doctor this week and he thinks I have have H Pylori infection ( rather than Candida or SIBO ), so another chronic bacterial infection, but not the original cause of my CFS.

It use to be alot easier to find info on chronic mycoplasma online and utube, alot seems to be missing. Also info on chlamydia pneumonia and cell wall defiecant bacteria. It I didn't know any better I'd say since 2015 alot of this info seems to have disappeared.

 

[heapsreal]

I don't know for sure if I have it yet, apparently about 40 to 50% of people have it but its not always causing disease, some of the tests are pretty cheap though its a lateral flow test like the coronavirus ones so I am going to try that as soon as possible. Something caused me to develop a couple of food allergies, milk intolerance and general sensitivity to carbs / sugar, plus high levels of hydrogen gas that seem to come and go at random. Also at the same time as the sudden onset of food issues, MCS and mold sensitivity which are perhaps the worst parts of it.

I found something on this mycoplasma topic which might be interesting to read , this one is from 2019
https://www.scirp.org/journal/paperinformation.aspx?paperid=95720

Interesting, looks like a collection of Dr Nicolson's work.

 

[Garz]

It use to be alot easier to find info on chronic mycoplasma online and utube, alot seems to be missing. Also info on chlamydia pneumonia and cell wall defiecant bacteria. It I didn't know any better I'd say since 2015 alot of this info seems to have disappeared.

there have been some published changes to the way the main search engines algorithms report search results as a result i think of government lead initiatives to reduce "misinformation" on health topics - mostly since COVID-19 - where the issue came to a head - but was already happening before that.

these are private businesses so can order and or omit search results as they see fit.

the sites themselves have not normally been taken down - its more that the are being reported lower down the search order by the search engines - who believe their policies are overall helping the general public

its not a conspiracy theory type thing but more of a published policy i think - Hip here has written about it before - as its one of the factors generally lowering traffic to PR forums

you should still be able to find the actual published medical papers by searching directly on sites like PubMed -
and other less mainstream search engines like Brave search may have less obvious curation of search results vs say google

 

[heapsreal]

there have been some published changes to the way the main search engines algorithms report search results as a result i think of government lead initiatives to reduce "misinformation" on health topics - mostly since COVID-19 - where the issue came to a head - but was already happening before that.

these are private businesses so can order and or omit search results as they see fit.

the sites themselves have not normally been taken down - its more that the are being reported lower down the search order by the search engines - who believe their policies are overall helping the general public

its not a conspiracy theory type thing but more of a published policy i think - Hip here has written about it before - as its one of the factors generally lowering traffic to PR forums

you should still be able to find the actual published medical papers by searching directly on sites like PubMed -
and other less mainstream search engines like Brave search may have less obvious curation of search results vs say google

The problem with all the government sites coming up first on searchers is they are more likely misinformation or behind the 8 ball with information. One example is there's govt medical sites saying lyme disease with a typical lyme rash treated with one dose of doxycycline. And cbt was suppose to have been dropped from mecfs treatment guidelines a few years ago, yet still comes up in the first few searchers.
I understand they've changed the algorithm but I don't think its all for the better.

Do you have any opinions on duckduckgo as a search engine? I will look into brave search engine.

Cheers

 

[Garz]

i have not looked into it

i think DuckDuckGo, Brave etc market themselves on not collecting data on your searches
whether this means they follow less prescriptive policies for how they curate the search results i am not sure

as far as i know all search engines have polices for how they prioritise search results and i don't think they are obliged to publish them - as i guess they are proprietary to their primary businesses of advertising

you could try some back to back searches to see if there are differences

 

[heapsreal]

i have not looked into it

i think DuckDuckGo, Brave etc market themselves on not collecting data on your searches
whether this means they follow less prescriptive policies for how they curate the search results i am not sure

as far as i know all search engines have polices for how they prioritise search results and i don't think they are obliged to publish them - as i guess they are proprietary to their primary businesses of advertising

you could try some back to back searches to see if there are differences

I've been using 'Brave' and the searchers do seem very different from duckduckgo. I rarely use Google.

 

[JasonPerth]

The virus that caused my Instant Onset of MECFS i believe was Mycoplasma Pneumonia. The main symptom being a cough that was terrible into week 3-5 of the cough and then bed ridden for a week or 2 during the 5 weeks aswell.

If i believe this is the sole reason i am where i am today with ME, should i provide this report to my doctor to see if he will let me try the Antibiotic?
How long do i take the Antibiotic for?
What is the likely improvement if any?

 

[Garz]

i was in touch with Garth Nicolson briefly after he wrote many of his Mycoplasma papers

his line had changed dramatically - he seemed to be backing out of what he had written before

suggested i take a phospholipid supplement to help my fatigue

for someone who spent years pushing the case for mycoplasma as a source of CFS and Gulf War syndrome ( if i remember right i think his daughter was affected by that- so he had a personal connection ) - it was very odd indeed

my conclusion was that either he had come across something that had changed his mind completely - or someone had brought pressure to bear on him to change it for him.

 

[heapsreal]

someone had brought pressure to bear on him to change it for him

I have a feeling this was the case??

 

[Jyoti]

- or someone had brought pressure to bear on him to change it for him.

That is disturbing.

The virus that caused my Instant Onset of MECFS i believe was Mycoplasma Pneumonia.

Were you diagnosed with mycoplasma at the time? You knew what you had? My ME/CFS started with undifferentiated pneumonia, and only recently I am learning that it could have been either mycoplasma or chlamydia pneumoniae (CPn). The antibiotic treatment is long and from what I understand, arduous. At least six months, maybe four times that. Most doctors would not touch such a protocol with a barge pole.

Most doctors, I am learning, do not believe in chronic mycoplasma or CPn. So why would they treat it? Sadly, we know this routine only too well.

There are some, though. Lyme literate doctors seem best versed and understand the pathogen and its patterns better than other doctors. I have recently read a lot of great stuff about Fred Wagshul--a pulmonologist in Dayton OH (not sure if you are in France, based on your avatar, in Australia based on your name @JasonPerth--or where?). He has a nurse practitioner in his office who specializes in mycoplasma treatment with antibiotics and people rave.

I'd be surprised if John Chia would decline to treat, but that is just supposition.

There are also herbal routes to take. Stephen Harrod Buhner has a protocol laid out in his book Healing Lyme Disease Co-infections. And I have encountered a few reputable herbalists who might oversee such an undertaking. I think it is not totally unreasonable, based on my relatively limited understanding, to expect improvements, maybe even significant ones. I think the term that is used a lot is 'remission.' Which we know is not necessarily permanent. These are really tricky little buggers.

But the good news is that if this is the cause of your ME/CFS there are measurements/tests (have you had testing lately?) that can show that, and treatment that has a decent chance of making things better.