Hopeful1976
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How much longer do we have to wait? How many more years...
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.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.
Most of the problems in CFS are a response to the enormous detox load and failure to address them.
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.Where does the 'detox load' come from, for people who were just going on with their lives and then suddenly had ME?
With the nanoneedle testing of all drugs, I believe within a year from now we will have good drug candidates
I am on my way, slowly though, and still working for the right balance (which may change with time):How much longer do we have to wait? How many more years...
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 wellI 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.
Dear 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.
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.
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.
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
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.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.
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.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.
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
How much longer do we have to wait? How many more years...
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.
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.