I am sorry to vent my frustrations but have thought a lot about this the last couple of days and am just disheartened by all of it. This has got to be the stupidest illness there is.....one characterized not by what it is but by what it is not. I was with Klimas last week and we went through five or six different scenarios of what this could be:
Immune dysfunction
Dysregulated cytokines due to HPA issues
Infection in brain
Infection in gut
Smypathetic/parasympatheic nevous system imbalance
Genetic dysfunction
Retrovirus
Mitochodrial dysfunction
This is after 30 years of research and Klimas is one of the premier immunologiests n the world. Even some of our other best doctors (KDM) have no idea how certain new medications are going to react. I've read a lot of the recent positing on GcMac and it sounds like another guinea pig drug for us, with some improvement and a lot of symptoms and inflammatory markers worsening.
We hold onto every reasearch article or new supplement with hope that this may be the one. We listen to stories from a friend of a friend who tried something and felt better. For myself, I enjoy reading this site and keeping up to date with all the potential possibilities that could lead to new drugs for us in ten years or so after twenty more double blinded tests. Don't get me wrong, I think sites like PR are great and let us share information with each other.....but it is the doctors that ought to be figuring things out and I think they are failing miserably.
The one positive for me is the support among the community to monetarily support current research protocols. The last thing I was is for my children (or any children) to inhereit this illness without significant ways of helping mitigate the symptoms (or even potentially having a cure) and I am thankful that we have many people on the site to advocate.
We are like the Vietnam vets who the US government has forgotten about. The Japanese government, with approximately 1/3 rd the people of the United States, spends more on CFS/ME than the USA.
My feeling at this point is that we can just hope to go into a remission because the puppet master that's pulling the strings in our body gets bored for a while.
Sorry for the negativity and rant folks but after 15 years with this illness, I'll be excited when someone actually tells me what is wrong with me (not the 20 symptoms and test results that suggest things are wrong with me -I already know that) and a real treatment plan where I am not the guinea pig.
Here's too all of getting some answers sooner rather than later,
Gregg
Immune dysfunction
Dysregulated cytokines due to HPA issues
Infection in brain
Infection in gut
Smypathetic/parasympatheic nevous system imbalance
Genetic dysfunction
Retrovirus
Mitochodrial dysfunction
This is after 30 years of research and Klimas is one of the premier immunologiests n the world. Even some of our other best doctors (KDM) have no idea how certain new medications are going to react. I've read a lot of the recent positing on GcMac and it sounds like another guinea pig drug for us, with some improvement and a lot of symptoms and inflammatory markers worsening.
We hold onto every reasearch article or new supplement with hope that this may be the one. We listen to stories from a friend of a friend who tried something and felt better. For myself, I enjoy reading this site and keeping up to date with all the potential possibilities that could lead to new drugs for us in ten years or so after twenty more double blinded tests. Don't get me wrong, I think sites like PR are great and let us share information with each other.....but it is the doctors that ought to be figuring things out and I think they are failing miserably.
The one positive for me is the support among the community to monetarily support current research protocols. The last thing I was is for my children (or any children) to inhereit this illness without significant ways of helping mitigate the symptoms (or even potentially having a cure) and I am thankful that we have many people on the site to advocate.
We are like the Vietnam vets who the US government has forgotten about. The Japanese government, with approximately 1/3 rd the people of the United States, spends more on CFS/ME than the USA.
My feeling at this point is that we can just hope to go into a remission because the puppet master that's pulling the strings in our body gets bored for a while.
Sorry for the negativity and rant folks but after 15 years with this illness, I'll be excited when someone actually tells me what is wrong with me (not the 20 symptoms and test results that suggest things are wrong with me -I already know that) and a real treatment plan where I am not the guinea pig.
Here's too all of getting some answers sooner rather than later,
Gregg