How much longer

[Hopeful1976]

How much longer do we have to wait? How many more years...

 

[stefanosstef]

The research is now very well oriented and organized, it is moving forward very rapidly.With the nanoneedle testing of all drugs, I believe within a year from now we will have good drug candidates to alleviate most suffering for the majority of us.A true cure is a matter of funding and luck and this should take longer.

 

[JES]

There might already be working drugs available, such as copaxone or SS-31 (both showed response in the nanoneedle), suramin and a new anti-enterovirus drug being developed by the Rega Institute. The next (and potentially bigger) hurdle is drug approval, availability, cost and side effects.

-Copaxone is approved for MS but has much side effects, is expensive and requires subcutaneous administration.
-SS-31 is expensive, apparently doesn't have much side effects, but is still in clinical trials.
-Suramin is currently poorly availabe, no idea about price and requires IV administration.

Meanwhile there are a couple of non-drug treatments like CCI surgery and FMT, but also here the issue often boils down to availability and cost.

 

[Carl]

I don't have to wait for the answer, only until I can get it all done. I worked it out in Jan 2014 Unfortunately life has been dealing me with some difficult cards in the last 2-3 years. A broken leg early 2017 followed by an insect bite embedded in the back of my head which resulted in very significantly increased exhaustion. Most likely Lyme/a tick but useless NHS doctors refuse to do any testing, not that testing is very reliable. The method of eating I use - a modified form of fasting which significantly decreases my immune system burden, exhaustion and autoimmunity, which has always worked very well for me until that point and has worked/is working for other people who have had similar positive experiences, so they have told me.

Just about everything at home has failed on me, including my shower which means a mammoth effort just to get clean. No working heating/hot water. Failed fridge, faulty Ultra Sonic Cleaner which I need for treatment and which I have to get on and get repaired/replaced under warranty. To top that all off, my washing machine has failed which means spending days attempting to hand wash clothes which I rarely have the energy to do. I have a mountain of washing in my bath (no working hot water so it is not much use) and no way of getting it all washed.

The way that I look at it, is that life is doing everything possible to prevent me from restoring my health and eliminating all the crap/poor quality/bogus research on CFS. I would not count on research and I refuse to fund it. I do not want grug->drug[smelling correction] treatments because long term drug therapy is the wrong path IMO. What "they" want is everyone dependant on long term drug therapy which typically destroys health. The only companies who will contribute to a cure for CFS are the small start up drug companies because the large companies recognise the danger to their wider drug sales from participating in the industry I am talking about. I recognise that it would decimate their drug sales. That is why most have pulled out of these drugs development.

If you search for my posts you will get an idea of the cause and treatment that I am working on. I have successfully reduced my digestive permeability in one location but there are still a lot of infections remaining and all are extremely resistant. The one partly eliminated so far I believe was a staph infection but even that was not totally destroyed, no thanks to it's biofilm.

BTW All ideas on Increased Digestive Permeability aka (incorrectly as) "Leaky Gut" are incorrect and cannot and do not work! Taking L-Glutamine does not fix the digestive system because the whole idea fails to consider the true cause of that increased permeability which has absolutely nothing to do with tight junctions, think biofilm and you will be far closer to the truth. Science does not understand how the vagus nerve truly functions. How the different parts of the digestive system and body are linked and affect one another, which is why they cannot work it out and that is what is holding up progress IMO.

Most of the problems in CFS are a response to the enormous detox load and failure to address them. Glycine is widely deficient, not only in CFS. Read about it on pubmed, with illness requirements raise to an estimated 60 grams. When you understand what is happening, it all falls into place. I disagree with most treatments which are damaging and are merely a consequence. They have no place in CFS treatment IMO. Placebo anyone? lmao.

 

[stefanosstef]

I don't have to wait for the answer, only until I can get it all done. I worked it out in Jan 2014 Unfortunately life has been dealing me with some difficult cards in the last 2-3 years. A broken leg early 2017 followed by an insect bite embedded in the back of my head which resulted in very significantly increased exhaustion. Most likely Lyme/a tick but useless NHS doctors refuse to do any testing, not that testing is very reliable. The method of eating I use - a modified form of fasting which significantly decreases my immune system burden, exhaustion and autoimmunity, which has always worked very well for me until that point and has worked/is working for other people who have had similar positive experiences, so they have told me.

Just about everything at home has failed on me, including my shower which means a mammoth effort just to get clean. No working heating/hot water. Failed fridge, faulty Ultra Sonic Cleaner which I need for treatment and which I have to get on and get repaired/replaced under warranty. To top that all off, my washing machine has failed which means spending days attempting to hand wash clothes which I rarely have the energy to do. I have a mountain of washing in my bath (no working hot water so it is not much use) and no way of getting it all washed.

The way that I look at it, is that life is doing everything possible to prevent me from restoring my health and eliminating all the crap/poor quality/bogus research on CFS. I would not count on research and I refuse to fund it. I do not want grug treatments because long term drug therapy is the wrong path IMO. What "they" want is everyone dependant on long term drug therapy which typically destroys health. The only companies who will contribute to a cure for CFS are the small start up drug companies because the large companies recognise the danger to their wider drug sales from participating in the industry I am talking about. I recognise that it would decimate their drug sales. That is why most have pulled out of these drugs development.

If you search for my posts you will get an idea of the cause and treatment that I am working on. I have successfully reduced my digestive permeability in one location but there are still a lot of infections remaining and all are extremely resistant. The one partly eliminated so far I believe was a staph infection but even that was not totally destroyed, no thanks to it's biofilm.

BTW All ideas on Increased Digestive Permeability aka (incorrectly as) "Leaky Gut" are incorrect and cannot and do not work! Taking L-Glutamine does not fix the digestive system because the whole idea fails to consider the true cause of that increased permeability which has absolutely nothing to do with tight junctions, think biofilm and you will be far closer to the truth. Science does not understand how the vagus nerve truly functions. How the different parts of the digestive system and body are linked and affect one another, which is why they cannot work it out and that is what is holding up progress IMO.

Most of the problems in CFS are a response to the enormous detox load and failure to address them. Glycine is widely deficient, not only in CFS. Read about it on pubmed, with illness requirements raise to an estimated 60 grams. When you understand what is happening, it all falls into place. I disagree with most treatments which are damaging and are merely a consequence. They have no place in CFS treatment IMO. Placebo anyone? lmao.

Do you have a thread or a link to a post where you describe your therapy?As I've already have Hashimoto's (but tsh and t3 are still at normal range) i believe i have gut permeability issues too.

 

[Wishful]

Most of the problems in CFS are a response to the enormous detox load and failure to address them.

Where does the 'detox load' come from, for people who were just going on with their lives and then suddenly had ME?

 

[Carl]

I have not posted a thread but there are posts by me which give ideas of what I have been working on. Everyone has gut permeability issues to some degree but CFS sufferers have it in one location which is a very vulnerable location causing all the damage. I have seen threads on this forum which has shown me that what I know to have happened in me has also happened in other people. However the tests that they had did not include a far more important test which seems to be sadly lacking. Hypothalamus dysfunction is an understatement and fails to show what is really happening in the body of CFS sufferers because it is far more than dysfunction. Are you aware that the hypothalamus was once believed to be the source of the bodies lifeforce? What might destruction do?

The bacteria, yeast or fungi which can cause CFS are numerous 1000s and highly resistant and I have been attempting to work out ways of defeating them. That means taking into account 8 families of Efflux pumps to reduce their resistance to antimicrobials. The biofilm I can defeat and have done so on numerous occasions. It is the Efflux Pumps which are the problem, having to take into account such a wide number of micro-organisms ie just about everything. The ABC Efflux Pump Inhibitor Reserpine should work, I do have a small amount of it, but I am reluctant to use it due to it's side effects ie bradycardia, depression some times lasting long after treatment which does not make me want to use it. I already take a herb which causes bradycardia and my heart rate is around 55 bpm, therefore taking something which could lower that further is not something I want to happen. It might not be such a problem for many on this forum with high/fast resting heart rates. Unfortunately it is the only thing that I currently know of which will work against mycoplasma spp. bacteria.

ATM with all the others things demanding my time/energy I have not made as much progress as I wanted. I damaged my stomach about a month back when I consumed a large amount of potassium bicarb while severely hypoglycaemic taking 15x the amount of pot bicarb than I usually do which caused stomach erosion and left me throwing up blood and is still not back to normal.

Where does the 'detox load' come from, for people who were just going on with their lives and then suddenly had ME?

The IDP, large food molecules entering the bloodstream challenging the immune system, creating antibodies and stimulating the release of histamine, processes which create inflammation. Plus waste products and LPS flooding into the bloodstream in the colon. That creates an enormous detox load for the liver to deal with stretching the detox capabilities of the liver and dramatically raising nutrient requirements. In particular Glycine which is the primary amino acid in amino acid conjugation and is also needed for collagen synthesis which could be a factor in CCI IMO. Research on pubmed indicates that diet does not meet the bodies glycine requirement and most normal people are deficient. In ill people, people where digestive permeability is raised and detox requirements are dramatically increased, glycine requirement can rise to an estimated 60 grams/day. Glycine is also required for glutathione synthesis which is also needed for detox purposes and to counter inflammation.

Fixing the IDP is the solution but no where on the internet that I have seen addresses this issue correctly. Most, including the large thread on this forum focus on nutrients such as L-Glutamine which shows me that they do not understand the cause, an infection. I read with some amusement how Hip was attempting to get L-glutamine into his colon believing, wrongly I will add, that it fixes IDP. The colon is not relevant because that is not where the problem lies! There is IDP in the colon but that does not mean that the problem lies there. I can tell you were the area in the colon which is affected, the transverse colon, I will not narrow that down any closer than that, but I do know the location. Researcher have taken the easy route and done the extra effort to narrow it down.I have know since Jan 2014 and I have been working to correct it with some partial success. The high resistance of these micro-organisms is the problem which I am attempting to overcome. However it needs to work for every possible type of infection which is an enormous task. All the problems that I have had in the last 3.5 years have only made everything far more difficult. I am at the very severe end of the scale, I am not bedridden like I would be if I ate normally. I would most likely be dead if I had taken my doctors advice because I would of most likely died of circulatory failure just like all men on my fathers side who died only a few years older than me.

Even when the cause is finally identified, a solution could be difficult with current antibiotics. Most of the large drug companies have pulled out of antibiotic development citing it as being none profitable. There are only meant to be 42 antibiotics in development and of those only about 8 are expected to make it to market.

Just destroying the infection will not really be the end of it all because of how it has weakened the body. Without repairing adrenal glands there will always be a susceptibility if another similar infection does the same thing. My aim is to first destroy the infection(s) and then make sure that nothing else is able to take up residence ever again. But first things first. Lyme needs to be eliminated.

 

[Neunistiva]

With the nanoneedle testing of all drugs, I believe within a year from now we will have good drug candidates

I remember the nanoneedle and FDA approved drugs to be tested being talked about in 2017. Nanoneedle first needs to be adapted to gave higher throughput because for drugs different combinations and different doses need to be tested, so I think it's a lot slower than just measuring impedance in ME/CFS patients vs controls.

I am not saying not to be excited but I think we need to appreciate the constraints (lack of funding) that Dr. Davis and Dr. Esfandyarpour work under. Without more money I don't think we can expect them to do it so soon.

 

[percyval577]

How much longer do we have to wait? How many more years...

I am on my way, slowly though, and still working for the right balance (which may change with time):
https://forums.phoenixrising.me/threads/thalamus-basalganglia.61714/#post-2235453
It is turning out that I need to take in phosphate (say from youghurt), and 30-60 min later doing the VitD-tea thing.

Hope it doesn`t sound too strange.
If the interpretation is right and can be generalized, I should bet on VanElzakker and Younger, although any (low grade) inflammation might be a downstream effect.

 

[beatsmyth]

I already take a herb which causes bradycardia and my heart rate is around 55 bpm, therefore taking something which could lower that further is not something I want to happen. It might not be such a problem for many on this forum with high/fast resting heart rates. Unfortunately it is the only thing that I currently know of which will work against mycoplasma spp. bacteria.

can you tell me which herb this is, I tested pos for mycoplasma and am 100% sure this has been the reason for my CFS and nerve pain and associated gut issues as well. Going gluten free has left me pretty much pain free, but now I will soon be starting a long term pulsed Antibiotic therapy and anything else I can find to fight off the mycoplasma as well as fixing the damaged myelin sheaths with various meds as well

 

[perrier]

I have not posted a thread but there are posts by me which give ideas of what I have been working on. Everyone has gut permeability issues to some degree but CFS sufferers have it in one location which is a very vulnerable location causing all the damage. I have seen threads on this forum which has shown me that what I know to have happened in me has also happened in other people. However the tests that they had did not include a far more important test which seems to be sadly lacking. Hypothalamus dysfunction is an understatement and fails to show what is really happening in the body of CFS sufferers because it is far more than dysfunction. Are you aware that the hypothalamus was once believed to be the source of the bodies lifeforce? What might destruction do?

The bacteria, yeast or fungi which can cause CFS are numerous 1000s and highly resistant and I have been attempting to work out ways of defeating them. That means taking into account 8 families of Efflux pumps to reduce their resistance to antimicrobials. The biofilm I can defeat and have done so on numerous occasions. It is the Efflux Pumps which are the problem, having to take into account such a wide number of micro-organisms ie just about everything. The ABC Efflux Pump Inhibitor Reserpine should work, I do have a small amount of it, but I am reluctant to use it due to it's side effects ie bradycardia, depression some times lasting long after treatment which does not make me want to use it. I already take a herb which causes bradycardia and my heart rate is around 55 bpm, therefore taking something which could lower that further is not something I want to happen. It might not be such a problem for many on this forum with high/fast resting heart rates. Unfortunately it is the only thing that I currently know of which will work against mycoplasma spp. bacteria.

ATM with all the others things demanding my time/energy I have not made as much progress as I wanted. I damaged my stomach about a month back when I consumed a large amount of potassium bicarb while severely hypoglycaemic taking 15x the amount of pot bicarb than I usually do which caused stomach erosion and left me throwing up blood and is still not back to normal.


The IDP, large food molecules entering the bloodstream challenging the immune system, creating antibodies and stimulating the release of histamine, processes which create inflammation. Plus waste products and LPS flooding into the bloodstream in the colon. That creates an enormous detox load for the liver to deal with stretching the detox capabilities of the liver and dramatically raising nutrient requirements. In particular Glycine which is the primary amino acid in amino acid conjugation and is also needed for collagen synthesis which could be a factor in CCI IMO. Research on pubmed indicates that diet does not meet the bodies glycine requirement and most normal people are deficient. In ill people, people where digestive permeability is raised and detox requirements are dramatically increased, glycine requirement can rise to an estimated 60 grams/day. Glycine is also required for glutathione synthesis which is also needed for detox purposes and to counter inflammation.

Fixing the IDP is the solution but no where on the internet that I have seen addresses this issue correctly. Most, including the large thread on this forum focus on nutrients such as L-Glutamine which shows me that they do not understand the cause, an infection. I read with some amusement how Hip was attempting to get L-glutamine into his colon believing, wrongly I will add, that it fixes IDP. The colon is not relevant because that is not where the problem lies! There is IDP in the colon but that does not mean that the problem lies there. I can tell you were the area in the colon which is affected, the transverse colon, I will not narrow that down any closer than that, but I do know the location. Researcher have taken the easy route and done the extra effort to narrow it down.I have know since Jan 2014 and I have been working to correct it with some partial success. The high resistance of these micro-organisms is the problem which I am attempting to overcome. However it needs to work for every possible type of infection which is an enormous task. All the problems that I have had in the last 3.5 years have only made everything far more difficult. I am at the very severe end of the scale, I am not bedridden like I would be if I ate normally. I would most likely be dead if I had taken my doctors advice because I would of most likely died of circulatory failure just like all men on my fathers side who died only a few years older than me.

Even when the cause is finally identified, a solution could be difficult with current antibiotics. Most of the large drug companies have pulled out of antibiotic development citing it as being none profitable. There are only meant to be 42 antibiotics in development and of those only about 8 are expected to make it to market.

Just destroying the infection will not really be the end of it all because of how it has weakened the body. Without repairing adrenal glands there will always be a susceptibility if another similar infection does the same thing. My aim is to first destroy the infection(s) and then make sure that nothing else is able to take up residence ever again. But first things first. Lyme needs to be eliminated.

Dear Carl,
So many young people are suffering unbearably. If you have some ideas of what may be the cause, please contact some researchers. This illness is horrific, and the severely ill are just trapped in their beds in agony around the clock. Thank you

 

[Carl]

@beatsmyth
Reserpine from Rauwolfia Serpentina or Rauwolfia Vomitoria and there are a number of other related species which also contain Reserpine. See the article below for details. Reserpine is an ABC Efflux Pump Inhibitor which reduces the efflux pump activity of bacteria using the ABC efflux pump superfamily and it looks like ABC Efflux Pumps are the most active in Mycoplasma bacteria. That has been the only one that I have so far been able to identify. It's unfortunate that Reserpine is a compound that is so contra-indicated for me. It can also cause prolonged depression, long after treatment stops, which is something else that I really do not want to risk. Weak Kidney energy is a sign of chronically depressed mood and anxiety related problems which I would say affects everyone on this forum whether they realise it or not. This is all about the adaption to stress which raises background cortisol levels and increases the function of the whole body, but in particular the Liver.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4566472/

There are also some TCM herbs which are highly effective against Mycoplasma bacteria. I have the most effective ones as shown in the following research:
Be aware that Isatis Root can be hard on the kidneys and is not recommended for long term use because it can cause some damage. It is however the strongest of all Chinese herbs against Mycoplasma. It is also meant to be effective against many different pathogens including Viruses which pre-occupy many on this forum.
The TCM herbs were tested against M. Hominis but should also be effective against other strains.
Susceptibilities of Mycoplasma hominis to Herbs
Steven H Buhner the herbalist who has published a number of books including ones on herbal antibiotics which I purchased and found to be quite a helpful introduction. He has also published a number of books on treating Lyme disease and co-infections. I purchased his book on Lyme called "Healing Lyme Disease Coinfections - Complimentary and Holistic Treatments for Bartonella and Mycoplasma". It was the Mycoplasma part which interested me and why I purchased the book. It mentions Houttuynia as being effective against Mycoplasma infections and a search brought up some research on Chinese herbs because Houttuynia is used in TCM but the research shows that it is not highly effective, not remotely close to the best herb Isatis Root. I have all the following herbs in powdered extract form from a Chinese Herb seller who I have purchased Tu Si Zi from for many years.

DI FU ZI - Broom Cypress Fruit - Fructus Kochiae Herb Powder Extract
BAI ZHI - Dahurian Angelica Root - Radix Angelicae Dahuricae Herb Powder Extract
HUANG BAI - Phellodendron Bark (Corktree Bark) - Cortex Phellodendri Herb Powder Extract
YU XING CAO - Houttuynia - Herba Houttuyniae Herb Powder Extract
BAN LAN GEN - Isatis Root - Radix Isatidis Herb Powder Extract
DA HUANG - Rhubarb Root - Radix et Rhizoma Rhei Herb Powder Extract

You might find the following articles useful and interesting if you seriously want to destroy an infective bacteria.
Inhibiting Bacterial Drug Efflux Pumps via Phyto-Therapeutics to Combat Threatening Antimicrobial Resistance
Bacterial efflux pump inhibitors from natural sources

I believe that one of the infections which is causing my Increased Digestive Permeability is Mycoplasma spp. It could be the one causing my CFS but with 6 in the location it is very difficult working out which is doing what and which tell tale symptom is caused by which micro-organism. I do know that it is very highly resistant, resisting everything that I have tried so far even with the biofilm removed. I am hoping that the Chinese herbs will destroy it and all the other infections (6) contributing to me IDP. All the biofilms need to be removed to help eliminate resistance before I will do that. That is fairly easy but I have some essential oils to do that which I want to mix so that it remains dispersed so that the oil does not clump together so that it can cover a wider area. I was going to use Liposomes to do that but reading shows that some essential oils effects can be affected by liposomes if the phosphatidylcholine content is above a certain level. Therefore I intend to try DMSO to see how oil will mix in that to see if it keeps the essential oil dispersed. DMSO is used in research to mix essential oils but so far I have not yet got around to testing it.

They must all be destroyed at the same time because otherwise they will become stronger and more resistant making the herbs that I use useless. That is why I wanted to find a comprehensive collection of EPI's to cover all Efllux Pumps that could be used by the micro-organisms. That is an absolutely enormous task.

Mycoplasma is a common infection in CFS but when it is in the blood it does not cause CFS. However it will certainly add to the burden. This is just a symptom of the resulting immune dysfunction caused by inflammation and raised cytokine levels which is a result of the immune system burden of large food molecules being absorbed into the bloodstream without IgA antibodies attached which promotes an immune system response.
https://www.ncbi.nlm.nih.gov/pubmed/12423773

 

[JES]

They must all be destroyed at the same time because otherwise they will become stronger and more resistant making the herbs that I use useless.

The problem for me is, the immune system is what should be destroying those infections. What is the reason we have to take all these antibiotic or herbal protocols for decades when people not sick can deal with these infections just fine? I'm sure even healthy people carry at least a couple of chronic infection since people catch bacterial and viral infections all the time from all kinds of sources. People in the Lyme community for example have been treating these chronic infections for decades, but I rarely see a story of anyone getting cured.

Just to be clear, I'm not saying herbal treatments don't work, in fact I am currently trialing another protocol myself, it's just that I'm pessimistic when people have had access to these herbal protocols for a long time and I don't read anyone getting cured from ME/CFS by using herbs.

can you tell me which herb this is, I tested pos for mycoplasma and am 100% sure this has been the reason for my CFS and nerve pain and associated gut issues as well. Going gluten free has left me pretty much pain free, but now I will soon be starting a long term pulsed Antibiotic therapy and anything else I can find to fight off the mycoplasma as well as fixing the damaged myelin sheaths with various meds as well

You shouldn't be 100% sure. I tested positive for mycoplasma antibodies several years ago. Back then I was also 100% sure this was causing my symptoms. Later when I did more testing, it turned out I have several other chronic infections as well (like most of us, even healthy people). The evidence suggests that (chronic) viral infections could be at least as big a problem in ME/CFS as bacterial infections, in fact there is very little research linking ME/CFS to mycoplasma.

At this point it would be impossible for me to say if my symptoms are due to bacterial, fungal, protozoal, viral or no infection at all (just an immune response stuck in autoimmunity, a disrupted microbiome, etc. etc.).

 

[beatsmyth]

You shouldn't be 100% sure. I tested positive for mycoplasma antibodies several years ago. Back then I was also 100% sure this was causing my symptoms. Later when I did more testing, it turned out I have several other chronic infections as well (like most of us, even healthy people). The evidence suggests that (chronic) viral infections could be at least as big a problem in ME/CFS as bacterial infections, in fact there is very little research linking ME/CFS to mycoplasma.

I understand what you're saying and I am keeping this in mind, however I was on a month of ABX 3 years ago for a flu that wouldn't go away and basically was almost back to normal from 1 month on Minocycline, one of the active ABX for Mycoplasma. Mind you back then I did not exactly know wtf I was dealing with at the time until a few months later when an immunologist found the myco and EBV titers. I'm not worried about EBV because I can keep that in check with anti-viral herbs, something I have done for years on end anyway. My big issue is an overgrowth of mycoplasma which the one month of minocycline didnt fully knock out, so now I will be working w my Doctor to do low dose long term, along with ban lan gen isatis root and LL-37 Antimicrobial peptide to fully knock it out this time around. A large component in Dr. Brownstein's protocol for CFS is to add potassium Iodide which has been absolutely miraculous part of my recovery this year along with the peptides BPC-157 + TB500.

Basically from everything I have done thus far, I am at about 60-80% back to normal and even started working 2-3 days a week after 10 years of being bed ridden. Thus current success I am having is currently going on for 10 months long. After my next ABX protocols, I will work on gut healing and experiment with a mitochondrial peptide, considering I have really great success with peptides in general

 

[beatsmyth]

I was going to use Liposomes to do that but reading shows that some essential oils effects can be affected by liposomes if the phosphatidylcholine content is above a certain level. Therefore I intend to try DMSO to see how oil will mix in that to see if it keeps the essential oil dispersed. DMSO is used in research to mix essential oils but so far I have not yet got around to testing it.

You have to also consider steam inhalers for these oils and herbal decoctions as well, as I have suffered ongoing ear infections and sinus throat issues as well, which has lead me to believe that the mycoplasma has also lodged itself in the ENT system which also carries mucous membranes, besides just the gut.

It's funny you linked me that list because just the other day someone mentioned I should try ban lan gen isatis root at the local herbal store where I went to get CBD oil for my old dog, then you sent me this link and its the top herb against mycoplasma.

I'm getting ready to go on low dose long term Antibiotic therapy in about a week and will add pulsed ban lan gen isatis root + there is an Antimicrobial peptide called LL-37 I will be adding as well. People are reporting various fungal issues that have been treatment resistant entirely disappearing on this peptide after about week 4-5 of use and I think this can be another clue on the gut issues. You should also check out BPC-157 peptide which has been basically miraculous for me, am entirely off of painkillers since I started using it and it has a wealth of gut healing:

https://www.karger.com/Article/Pdf/338435

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5333585/

Mycoplasma is a common infection in CFS but when it is in the blood it does not cause CFS. However it will certainly add to the burden. This is just a symptom of the resulting immune dysfunction caused by inflammation and raised cytokine levels which is a result of the immune system burden of large food molecules being absorbed into the bloodstream without IgA antibodies attached which promotes an immune system response.
https://www.ncbi.nlm.nih.gov/pubmed/12423773

Yeah no surprise there. The mycoplasma also infects and causes an immune response which attacks the myelin sheath of the nerves, which has caused me tremendous nerve pain the last 10 years and resulted in use of pain killers,

https://www.sciencedaily.com/releases/2016/10/161003092441.htm

From the article:

"The bacterium Mycoplasma pneumoniae has been under suspicion for quite a while. Now, researchers at the University of Zurich, the University Children's Hospital Zurich, and the Erasmus University in Rotterdam have proved without a doubt that it is the culprit. In fact, mycoplasma is not only responsible for respiratory tract infections such as pneumonia in children and adults, it can also trigger Guillain-Barré syndrome (GBS) in infected individuals. The scientists have succeeded for the first time in culturing mycoplasma from a GBS patient in a laboratory setting.

Antibodies attack not only the bacteria but also the nerve pathways

The reason for this is the similarity between structures on the surface of the bacteria and the body's own nerve-sheath structures (molecular mimicry). This leads to an immune reaction, which attacks both the mycoplasma and the surrounding myelin sheath of nerve pathways. "

So in my case, I literally have always felt like whatever was wrong with me, was literally sitting in my nerves or attacking my nerves in some way and causing pain in this manner. When I am on ABX, or on my current supplements regimen to attck the myco," I am viritually pain free (albeit for a few odd bad days while I am adjusting to the increase of (for one example thyme oil). Basically the above article is exactly how I feel and eventually I tested pos for Myco as well. Basically my neuropathy is body wide.

So basically, I will be doing remylenation therapy after I can get this mycoplasma knocked out, luckily there are a number of methods and meds that do trigger remylenation.

Either way, I think we are on to something here, if we combine brains, we may get some sort of useful therapy going that can can boot this from our bodies. I am not even anywhere near healing the guy until I can knock out the myco, but once I di, then I'll focus on repopulation of microbes and whatnot.

Also you mentioned ban lan gen isatis root is not something to take long term right? Do you have a link or something which discusses periods of dosing?

 

[gbells]

How much longer do we have to wait? How many more years...

Look at the disease polio. It was discovered in 1894 but an effective vaccine wasn't created until 1960. And that wasn't a cure just a way to prevent it. However we now have incredible communications capability and the power of supercomputers. I think that all that is needed is the will to make progress in the disease and adequate funding and it would make progress. Right now I don't see much real progress in understanding the disease. If you can't understand it then you're just throwing darts in the dark.

https://www.historyofvaccines.org/timeline#EVT_100351

 

[JES]

So in my case, I literally have always felt like whatever was wrong with me, was literally sitting in my nerves or attacking my nerves in some way and causing pain in this manner. When I am on ABX, or on my current supplements regimen to attck the myco," I am viritually pain free (albeit for a few odd bad days while I am adjusting to the increase of (for one example thyme oil). Basically the above article is exactly how I feel and eventually I tested pos for Myco as well. Basically my neuropathy is body wide.

So basically, I will be doing remylenation therapy after I can get this mycoplasma knocked out, luckily there are a number of methods and meds that do trigger remylenation.

Either way, I think we are on to something here, if we combine brains, we may get some sort of useful therapy going that can can boot this from our bodies. I am not even anywhere near healing the guy until I can knock out the myco, but once I di, then I'll focus on repopulation of microbes and whatnot.

I have nerve pain as well, probably from small fiber neuropathy. One thing to remember is, minocycline is a curious antibiotic as it has several other effects beyond its intended effect. Minocycline is highly anti-inflammatory, reduces microglial activation, modulates the immune system and even improves arthritis (sources: 1, 2, 3). What's more, minocycline has been shown to directly reduce neuropathic pain (source), so this would be the most obvious candidate for any pain reduction effect. If this is the case, then perhaps the best option is to stay continuously on minocycline. In any case, there is no evidence any antibiotic will ever completely "knock out" an intracellular infection like mycoplasma.

I learned you cannot really trust antibody tests to mean much, especially not for bacterial infections. Several years ago I tested positive for mycoplasma antibodies (both IgG and IgM). I proceeded to treat this with a long-term course of roxithromycin (macrolide) and later doxycycline. After a month or two of treatment, my antibody levels actually went up. There is no good way to measure if you have an "active" mycoplasma infection using antibody titers, all it probably shows is that you have been infected with mycoplasma at some point in time.

Incidentally, I just redid several pathogen tests this year using another methodology provided by ArminLabs (ELISpot). Well, the ELISpot tests (which are supposed to test for active infection) showed no active immune response against mycoplasma, but positive borrelia results. My previous antibody results showed exactly the opposite, no borrelia antibodies, but instead mycoplasma antibodies, so these tests are quite useless when they don't even agree with each other.

 

[Wishful]

Right now I don't see much real progress in understanding the disease. If you can't understand it then you're just throwing darts in the dark.

I agree. I feel that quite a bit of the effort is targeted at downstream symptoms that are common, but not actually part of the core cause of ME. I believe that the core dysfunction lies in the brain, so studying blood and muscles won't reveal the cause. That's where I'd try 'shining the light'. I expect that microglial cells are involved, but I'm not sure whether the problem is inside them.