Cellular and nerve damage
Mycoplasmasmic Infections and other issues
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New research into ME/CFS/FM and mitochondrial mutation, see page bottom
The most recent research challenges long held opinions that FM causes NO physical damage and that it is not an inflammatory or infectious state. This may not be entirely true.
According to studies on the effects of FM, the mitochondrial cells, which are the cells that contain the lipids ( fats ) that make energy for muscle tissue to use, are being damaged. They are damaged due to the fact that they are not being cleared of waste products, by CoQ10, the enzyme that is supposed to clean up "ROS" (reactive oxygen species and other free radicals ) which is the name given in general, for waste products at the cellular level.
Now, what is interesting to note in this study is that in persons with FM, the fluid part of the blood is seems to have twice as much CoQ10, as the age matched controls. But NOT where it's needed, which is inside the mitochondrial cells of the muscle tissues. So those cells, become slated for pre-programed destruction when, they literally explode in order to rid themselves of waste products. This would explain why our muscles are often tired and weak, as the very energy producing cells that give the muscle power, have been damaged or destroyed.
Which creates a paradox for us, as the only way to build more mitochondrial cells, is to exercise, which, due to the muscle fatigue, is the one thing we often cannot do. Taking more CoQ10 and other anti-oxidants is said to help this depletion and stave off the cells destruction. As such cells have been removed from the body and "bathed" in CoQ10, and have "healed" as a result. Research
Likewise, a treatment called Lipid Replacement Therapy, Research is said to be effective as well. Which is again, an antioxidant regimen. But of a different sort, as the typical things one might take, such as CoQ10, fish oils, primrose oil, and other unsaturated fatty acids (omega-3 and omega-6), taken orally, have to be broken down into phospholipids, in order to be used by the mitochondrial cells.
There are several problems with that however, one being that it takes cellular energy to make the conversion ( and since the mitochondrial cells are already damaged, they have a hard time doing this inside the body ) and it means if the antioxidant is taken orally, that the substances have to be properly absorbed by the gut.
Which given how many of us have IBS and other mal-absorption issues, the body may not absorb the substances properly. Knowing this to be an issue, they tried injecting into muscle or doing an IV drip of the main antioxidants, directly into the blood stream. They found much better results. The process is still under examination.
I have seen this effect happening in myself with other supplements, for example Vitamin B, D and calcium. Now, I take them daily, yet on my blood tests, they are still showing as being insufficient, which is leading my doctor to consider some very "old school" medicine, which is direct Vitamin B 12 shots and the like for me, to counter the deficiency.
( Such things were routinely done by GP doctors, of say 30-40 years ago, and such "old time" injections are often discounted by most of the current day medical society. But it seems the old docs might have had the right idea after all even if, at the time, they did not know why it worked better to give injections VS pills in many cases. )
Morton’s Neuroma and other nerve issues and Fibromyalgia:
"Many orthopedic surgeons have noticed that there seems to be a link between Fibromyalgia and Morton’s Neuroma. Though the association between the two conditions is unknown, upon treatment for Morton’s Neuroma many of the symptoms of Fibromyalgia decrease in severity or disappear entirely. This may indicate that nerve damage or injury plays a large role in causing Fibromyalgia pain." Research
For me, I did a cart before the horse, as this was one of the first signs I had. I started having pain in my feet in my 30's, which had to be operated on before I reached the age of 40. So I know this particular issue, quite well. ( It feels like someone is sticking your foot with a red hot ice pick when you put your foot down. Some days, you literally cannot walk. ) However, in my case, the FM came in later.
And it must be noted here, that despite the fact that most orthopedic doctors ( including those in the above article ) like to blame womens shoes for this disorder, that has been proved wrong. This is due to the simple fact that in other parts of the world, where loose shoes or even going barefooted, is the social norm, it must be noted: That they have the same problems with Neuromas of the foot, as we do here in America.
So don't let some doctor make you feel like this is "all your fault." Now, tight shoes are going to make the pain more obvious and a lot more intense, as it really irritates the nerve ball that has grown between your toes to be squeezed like that. But it cannot be said that such foot wear is what gave you the disorder to begin with.
The overlap, of Morton's Neuroma and FM is considerable ( FM and overlap on site link ) We with FM, have long suspected that the nerves, were actually being damaged in FM. This example suggests that a lot of our pain is due to as yet undetected nerve damage. Now, given as even seeing nerve damage, other than under a microscope is difficult, this is a hard one to research. Morton's Neuroma is an exception to that, mainly due to its size. It is a literal ball of nerve tissue, so it is much more visible.
MS and FM: ( Multiple Sclerosis )
"MS is characterized by intermittent damage to myelin ( the wrapping of thin membrane that covers nerve tissue* ) called demyelination. Demyelination causes scarring and hardening (sclerosis) of nerve tissue in the spinal cord, brain, and optic nerves. Demyelination slows conduction of nerve impulses, which results in weakness, numbness, pain and vision loss."
Now, again there are many doctors and researchers, who feel that the same process is happening in FM. The only difference, is the degree or the severity of the damage. It is further suspected that Mycoplasmas, which are a bacteria, may be to blame for not only our problems with FM, but many other diseases as well, including MS. Research
"Mycoplasmas have some of the simplest genomes among bacteria. The best known pathogenic mycoplasma, M. pneumoniae, is the cause of ‘walking pneumonia,’....Mycoplasmas do not contain the genes needed for amino and fatty acid or vitamin synthesis; thus, they need to steal it from host cells in order to survive. Simply put, they are parasitic bacteria. Once in the cell, they steal lipids (fats) like cholesterol from the mitochondrial, the components of a cell that produces energy. This makes the mitochondrial ‘leaky,’ and they lose electrons. This is similar to a battery running down when the insulation around the battery is removed. This may be why patients with intracellular pathogenic Mycoplasmas, are almost always fatigued. They have run their cellular batteries down, so that less high energy molecules are available and they are exhausted at the cellular level.” Research
People with FM who have multiple issues, according to this study have been found to have a wide variety of Mycoplasmas. It is surmised, that each type is attacking a different part of the body. Research
Notice: How the two concepts, the first one I introduced, and this one, over lap. The same attacking of cells and perhaps the same reason for the problem. In study one, they note that the mitochondrial cells are being damaged or destroyed, by their own waste products. Here, maybe the reason why they have that problem in the first place.
It is suspected in many other illnesses that an underlying infection, is thought to be the cause. An infection that goes for the most part, undetected, due to mycoplasmas habit of mimicking the shape and size of "normal" cells, generally by hiding inside a floating cell that they have already killed.
This may also be the reason for high cholesterol, that is not related to poor diet, since the mycoplasmas are stealing the "good" cholesterol, leaving an excess of the "bad" HDL behind. I have found no studies on that issue .. yet .. but it seems to be a reasonable working assumption. ( given as my own HDL went from totally normal, to 300+ in one year, with no change in diet.. I personally suspect this will be found to be true )
This would also tend to explain the fact that CoQ10 is heavy in the blood stream of someone with FM, but NOT in the mitochondrial cells. It is assumed this is so, since the infection has latched on to the cell, mimicking its shape, while stealing the lipids. The very cells that are supposed to combat them, often are either compromised by the mycoplasma themselves, and or, do not even see the mycoplasma, to fight them. ( Most immune cells "find" out of place cells, meaning those that do not belong, by the shape of their cell wall )
"Since mycoplasma have no cell wall, immune cells can not 'see' them. Infected white blood cells (leukocytes) are not killed, but disabled. This results in the immune system being under the false impression that there are enough white cells in circulation. Both under activity (anergia) and over activity (hyperergia) of the immune system have been reported as a result of mycoplasma infections." Research
Gulf war: GWI:
This disease, has been heavily studied not only by the military, but by private researchers. As these were prime condition Veterans, who came back, ill, weak and in some cases, died as a result. Far too often, they are mistakenly diagnosed with PST ( post traumatic stress ) However, further research has shown that not only do many of them have Mycoplasmic infections, but that they can and do "spread" that infection, to others.
"Moreover, it is not unusual to find immediate family members who display similar signs and symptoms. For example, there is evidence that GWI has slowly spread to immediate family members, and it is likely that it has also spread to some degree in the workplace. A preliminary survey of approximately 1,200 GWI families indicated that approximately 77% of spouses and a majority of children born after the war had signs and symptoms similar or identical to veterans with GWI." Research
Now, we have always been told that FM is not infectious. That any tendency to "run in families" must be genetic. But what if it's not ? What if, like the war vets, we can literally pass on the disease directly, via an infection? Scary thought. This has not yet been proved in FM, but it bears looking into.
"Cytosines are proteins released by the cells in your immune system that help regulate your immune response."
Now, it has long been known that those of us with FM, show high amounts of these proteins in the blood stream, without an "obvious" infection. "These Proinflammatory cytosines provide signals to the central nervous system, creating exaggerated pain as well as a number of physiologic, behavioral, and hormonal changes. These changes are frequently referred to as the sickness response, which seems representative of FMS patients' symptoms" Research
Now, if you take a Mycoplasmic infection into account, the action of the cytosines makes sense, as there IS an infection they are reacting to. Which could lead to the over production of muscle waste products, due to a higher immune system response. In any infectious state, the muscles are tense and have to work harder, which for short term, is no big deal. But in FM, it is over a very long term and the waste products soon out strip the energy produced by the cells.
The absorption of those waste products however, might be being interfered with by the Mycoplasmas, who have stolen the very lipids the cells use for energy. Now how this theft could be interfering with clean up ... is the simple fact, that while it's doing its stealing, it is convincing the body that the cell is fine, does not need any help thank you, in perfect shape here.
Meanwhile the little vampire is sucking the cell dry leaving a damaged or dead husk behind. Hence the high levels of CoQ10 in the blood stream, as the body, quite rightfully, expects to be doing a certain amount of clean up, particularly for those of us with FM.
As we are at the "lactic threshold" the point where the muscle tissues are at their most tired and toxic with waste products, almost constantly. But the body is being fooled into thinking that everything is already clean. Since it has been so effectively fooled, the CoQ10, wanders around the blood stream, mop in hand so to speak, but they are not doing very much waste product cleaning.
Nerve demyelination could be traced back to the same source, as it seems that the body attacks itself, as many doctors and researchers have postulated as being the cause for MS. With an immune system gone radical however, this self destruction may not be the body attacking the self, at all. Rather it is trying to attack the mycoplasma and it does it for so long, that it does damage to the very nerve cells it's trying to protect.
Or is it, as in the case with the mitochondrial cells, the body is being fooled into thinking the nerve cells are fine. Meanwhile, they are being damaged to the point where they cannot repair themselves and literally ossify. (sclerosis)
This over active immune system could also explain why we with FM, seldom seem to catch the common colds and flu bugs going around, but the few times we do, we get it with a vengeance.
As was said to me once by a doctor "Healthy peoples immune systems are like a car going 5 mph, only speeding up if there is an identifiable threat. Now, for someone with FM, their immune system is running at 35 mph, all the time."
If you consider that there is a infection going on, all the time in FM, then the hyper active immune system response seems very reasonable. But, due to the fact that the bodys resources are limited, it cannot keep up being on high alert all the time. So, it runs out of resources and then down we go, hard and fast and are generally, a long time recovering from any secondary illness. As at the moment, when we got the infection, if the over active immune system theory is true, we really did not HAVE much of an immune system at the time.
It must be noted here, that the typical short course of antibiotics given for acute infections, according to all the reports are not effective against mycoplasma. As mycoplasmas are very resistant to antibiotics for one and for two, most antibiotics depend on the immune system to "take over" once they have knocked down the infection to a more reasonable level.
For those of us with FM, given the variably of our immune response, this is not likely to happen( and considering that due to their size and lack of a cell wall ... Mycoplasmas can literally hide from our immune system and from most antibiotics. As many of them are designed to attack the cell wall of the bacteria, in order to kill it. )
Long term antibiotic use, is considered the only way to really combat Mycoplasmasmic infections at this time. This of course, creates its own problems as antibiotics have a bad habit of killing off the "good" bacteria, such as your intestinal flora, as well any bad bacteria. There are many studies being done on this matter both for and against it, as a treatment. The main fear on those against it, is a very real one.There is a risk of creating more "super bugs" by the over use of antibiotics.
formerly known as CFS)Myalgic Encephalomyelitis
While in ME/CFS, viruses get a lot more press and study ... the same mycoplasma infection, as is surmised to be present in FM and other chronic fatigue states, is seen in high numbers in persons with ME. In fact, Mycoplasma was once called a virus, due to its small size and behavior. Since it, like its viral cousins, it feeds off of the host cell.
So what to look for ?:
top three pathogens that Chronic Fatigue Syndrome and Fibromyalgia
patients on the Mycoplasma Registry test positive for, using PCR blood
Now for the semi good news:
The one thing about all of the above, that have Mycoplasmas as a component in common is A: While Mycoplasmas can be transmitted, they do so slowly, over long periods of time and in a healthy person, they can most often be fought off. And B: They are treatable. The trick is, finding out if you have any of them to begin with, since it takes an electron microscope to even see them. As they must be seen and categorized, before treatment can begin. There are many pros and cons on the entire matter, which is still under investigation Research
New research into ME/CFS/FM and mitochondrial mutation and gene variations acquired after birth. 2017
And it seems I was right, that more investigation would take place into this issue and here is just one of many studies that have been done, that would explain a whole heck of a lot for those of us with FM/ME and CFS. As well as open the door to treatments, that might finally end this all too familiar catch 22 we find ourselves in over exercise, which is:
...if you do not get enough exercise, the muscles atrophy, to the point where you cannot exercise, so you must exercise to prevent atrophy, but you cannot exercise, due to the extreme fatigue and pain that exercise brings, reapete Ad nauseam... sigh. :(
(Side note: The sentence is a visual tounge twister, as just thinking it or reading it, tends to tie your mental tounge into a knot :) So you are not alone in that feeling when you read that, I feel that way and I created it. But it happens to be the exact truth that defines the frustration we all feel, when faced with the conundrum of: we are told and the body demands that we exersize, but ... is it the last thing we are able to do enough of, due to pain and fatigue, to do us the least bit of good )
Anyway, new research, that
might lead to a solution for us :)
Lights study: The original research question was into why the levels of molecular receptors associated with fatigue and pain skyrocket after exercise in white blood cells, creating the post-exertional malaise (PEM) we are all familiar with. What is suggested by this study, is that it is a genetic mutation. Almost 90% of the group studied, had issues with specifically with one gene called the alpha 2A receptor (AD2A).
This one very important receptor is what keeps our legs from pooling blood while standing and it is the same one responsible for answering the muscles demand for more blood, when we exercise. For those of us with this mutation, that call, goes unanswered and the muscle is denied blood flow and as a result they crash and burn, taking us along for the ride.
Moreover, when looking for the direct cause of this effect, it proved to be in almost all cases, auto-antibodies that were attacking the very receptors needed to increase blood flow.
Overall results as follows: Modified text
( assumed )
Exposure to a pathogen, that results in genetic mutations (to the mitochondrial DNA)
That in turn attack the mitochondria in immune cells. (creating a low energy state)
The low energy states that ensue, inhibit the immune cells from filtering out autoantibodies. (those antibodies that attack the body itself by mistake)
The auto-antibodies (then) attack the beta adrenergic and other receptors that are involved in blood flow and other processes.
The result is extreme fatigue associated with even low levels of exercise.
" A key distinction between FM patients without fatigue and ME/CFS and FM patients with fatigue emerged when the Lights looked at the baseline findings. It turned out that ME/CFS patients looked like healthy controls at baseline, but the “pure” FM patients without fatigue looked very different. The expression of three genes were dramatically elevated – so dramatically, in fact, that Light suggested that they might not be able to get any higher during exercise".
Well worth a full read, and NHI ( National Institutes of Health, government funding ) thinks this is promising as well, as they have funded more research. More to follow, when it becomes available.