Finally, a diagnosis and treatment plan (I hope). Or at least something to do.
First of all, I want to thank all you guys, as I found this idea of getting retested for lyme (beyond the simple test that I took years ago) as well as the lab and then going to an llmd came from you. As I've mentioned in the past, you are my doctors.
I know a lot of people have commented that if someone gets a diagnosis of lyme then they do not have cfs. And some have commented that maybe cfs is really undiagnosed lyme, which gives me to think, why have so many of us not been tested with a more reliable test for lyme.
But, what I meant to say is that I think it is irrelevant whether cfs for some is a misdiagnosis for lyme, or whether lyme is a co-infection of cfs, or whether one caused the other. I am under the assumption that CFS is a multi-system crash, where something, a bacteria, a virus, a mold/toxin, stress, etc causes a system to start going into "safety mode" where it only activates itself partly, causing other systems to domino in affect. This may be why there are so many commonalities while there are also so many differences and different cures. For each individual they need to find that initial cause (causes) that triggered the systems from collapsing, which is why many of the popular treatments help maybe 10% of cfsers each. However, as the systems are collapsing together, this could be the reason why there is such a broad similarity to everyone's symptoms. If this is true, then CFS would be the term for the multi-system collapse caused by a host of different initial diseases or triggers. (This would answer the same/subsets/waste-basket question). This would also explain why we are in such excruciating pain and disability, yet for the most part the extra morbidity rate is non-existent. As such, whether lyme was the initial trigger to start the systems crashing (which might have been in my case) or mold or viral, etc, I think the end result for all of us is relatively the same.
I have a second thought which I think is worth looking into in each individual searching for the cure. I think that besides for the initial trigger, there is a secondary large component that does not allow for us to attack the initial component. Therefore, when we address the initial component, the secondary one does not allow us to eradicate it, and when we remove the secondary component, it gets rebuilt from the main trigger. (I know this is what Rich was arguing for with his methylation protocol). Many doctors propose trying one protocol and approach at a time, which I think is a mistake, as protocol A might inhibit the secondary large problem, while protocol B might inhibit the initial trigger. Each one alone may cause temporary ups, but will never completely remove the CFS, and as soon as the protocol is switched, one main aspect will rebuild the second. (ie, let's say (completely hypothetically) there is a b12 and other vitamin deficiency which was initially triggered by a virus. Trying to deal with the virus with anti-virals will never work, as the vitamin deficiency will not allow it to fully eradicate it. However, as the virus is being fought off, the cfser will start to feel better, but never fully. When he switches his protocol to fix the vitamin deficiency, it will wane causing the cfser to start to feel better, but the virus will still be there constantly offsetting and causing the nutrients to never fully absorb and accomplish what it is supposed to. The same could be said about a bacteria and the toxins or biofilms that it creates, that other members are mentioning).
In short, it may be better to either mix protocols together, or try some type of spiral approach, where you try the main attack on one approach, and add to it another, and then a third (while only keeping a minimum of the first) and then retry the first with a secondary approach, around in circles. (For example, try a strong regiment of antiviral, and then the main anti-mold protocol, and then switch to a vitamin deficiency protocol (lowering the antiviral protocol to a minimum) and then going back to an anti-viral regiment 2 (lowering the anti-mold to a minimum) then trying anti-mold regiment-2 (lowering the deficiency) and then a different deficiancy protocol, etc. This might fix the ouroboros cycle and fix the system permanently. (I should probably go into that in a different thread).
In my situation, at April of my 16th year, I developed cognitive problems, and visual processing. I had gotten new glasses, and assumed that that was the cause. However, in June, I started having the sleep, headaches, base head heaviness, chest pain, eye pain, brain fog, oi, followed a few months later with the joint and calves pain. I think that it may have started as bacterial, and then as the body couldn't handle it (or it couldn't fight off the bacteria) either the bacteria took control, or the systems started collapsing.
Sorry, I got excited that I could put my thoughts down semi-cohesively, that I went diverged, I will go into the lyme in the next post...
First of all, I want to thank all you guys, as I found this idea of getting retested for lyme (beyond the simple test that I took years ago) as well as the lab and then going to an llmd came from you. As I've mentioned in the past, you are my doctors.
I know a lot of people have commented that if someone gets a diagnosis of lyme then they do not have cfs. And some have commented that maybe cfs is really undiagnosed lyme, which gives me to think, why have so many of us not been tested with a more reliable test for lyme.
But, what I meant to say is that I think it is irrelevant whether cfs for some is a misdiagnosis for lyme, or whether lyme is a co-infection of cfs, or whether one caused the other. I am under the assumption that CFS is a multi-system crash, where something, a bacteria, a virus, a mold/toxin, stress, etc causes a system to start going into "safety mode" where it only activates itself partly, causing other systems to domino in affect. This may be why there are so many commonalities while there are also so many differences and different cures. For each individual they need to find that initial cause (causes) that triggered the systems from collapsing, which is why many of the popular treatments help maybe 10% of cfsers each. However, as the systems are collapsing together, this could be the reason why there is such a broad similarity to everyone's symptoms. If this is true, then CFS would be the term for the multi-system collapse caused by a host of different initial diseases or triggers. (This would answer the same/subsets/waste-basket question). This would also explain why we are in such excruciating pain and disability, yet for the most part the extra morbidity rate is non-existent. As such, whether lyme was the initial trigger to start the systems crashing (which might have been in my case) or mold or viral, etc, I think the end result for all of us is relatively the same.
I have a second thought which I think is worth looking into in each individual searching for the cure. I think that besides for the initial trigger, there is a secondary large component that does not allow for us to attack the initial component. Therefore, when we address the initial component, the secondary one does not allow us to eradicate it, and when we remove the secondary component, it gets rebuilt from the main trigger. (I know this is what Rich was arguing for with his methylation protocol). Many doctors propose trying one protocol and approach at a time, which I think is a mistake, as protocol A might inhibit the secondary large problem, while protocol B might inhibit the initial trigger. Each one alone may cause temporary ups, but will never completely remove the CFS, and as soon as the protocol is switched, one main aspect will rebuild the second. (ie, let's say (completely hypothetically) there is a b12 and other vitamin deficiency which was initially triggered by a virus. Trying to deal with the virus with anti-virals will never work, as the vitamin deficiency will not allow it to fully eradicate it. However, as the virus is being fought off, the cfser will start to feel better, but never fully. When he switches his protocol to fix the vitamin deficiency, it will wane causing the cfser to start to feel better, but the virus will still be there constantly offsetting and causing the nutrients to never fully absorb and accomplish what it is supposed to. The same could be said about a bacteria and the toxins or biofilms that it creates, that other members are mentioning).
In short, it may be better to either mix protocols together, or try some type of spiral approach, where you try the main attack on one approach, and add to it another, and then a third (while only keeping a minimum of the first) and then retry the first with a secondary approach, around in circles. (For example, try a strong regiment of antiviral, and then the main anti-mold protocol, and then switch to a vitamin deficiency protocol (lowering the antiviral protocol to a minimum) and then going back to an anti-viral regiment 2 (lowering the anti-mold to a minimum) then trying anti-mold regiment-2 (lowering the deficiency) and then a different deficiancy protocol, etc. This might fix the ouroboros cycle and fix the system permanently. (I should probably go into that in a different thread).
In my situation, at April of my 16th year, I developed cognitive problems, and visual processing. I had gotten new glasses, and assumed that that was the cause. However, in June, I started having the sleep, headaches, base head heaviness, chest pain, eye pain, brain fog, oi, followed a few months later with the joint and calves pain. I think that it may have started as bacterial, and then as the body couldn't handle it (or it couldn't fight off the bacteria) either the bacteria took control, or the systems started collapsing.
Sorry, I got excited that I could put my thoughts down semi-cohesively, that I went diverged, I will go into the lyme in the next post...
