Warning: While I was looking for feedback into a treatment my Dr. recommended this post seemed to veer off track and got onto a path of panning treatment options and badmouthing Dr's who may suggest these treatments.
Those of us who have been severely ill for many years know that we must do our due diligence before embarking on any new treatments and be open to the fact that there are no studies or research providing us concrete answers. We must decide ourselves if we trust our Dr's and are willing to take risks based on "non-traditional" test results and our Dr's clinical experience in treating our symptoms.
Over the past decade I have tried many treatments that have not worked or have made me worse. I have also laid in bed for years and done nothing, also getting worse under this "protocol". Basically there are no answers and we must make it through this living hell based on our wits and faith in each other and our Dr's.
This thread turned very unproductive, unfriendly and caustic quite quickly; that is not the direction or support I need while suffering so greatly. So before you wade into this thread please be prepared that it did turn ugly at some points and if your capacity for stress is low (like mine) you may not want to wade into this swamp.
There is some useful info from gingergrrl, Learner, Country Girl, Jeanne and Hip and others...I may be missing some....but there is also some nastiness directed at Dr's and a tone of having to defend your treatment even if it did in fact work for you.
I found the thread overbearing and intimidating and turned away from it for awhile until I received some private PM's that were more gentle and supportive.
I am not asking that people not disagree but I wish it could be done in a less hostile, accusatory manner.....one post told me I should fire my Dr.....because in my post I could not explain well my Dr's theory. My Dr's theory of this disease was also called bullshit?
Overall this thread was unpleasant and I will not be asking the board for direction or opinions again.
Thanks to all of you who did provide good useful direction.
Regards.
Hi:
I am seeing a new Doc who thinks my ME/CFS may be related to auto-immune issues. Many of you know who this Dr is and some of you have had success with his treatments. I will be having his myriad of testing done and from that point we will try to develop a plan of action.
I have been severely ill for 10+ years.....bedbound the last 6-7. I have debilitating fatigue, unrefreshing sleep, severe NMH, HPA dysfunction, EDS....etc. The only area I am lucky in this disease is my cognition is not severely affected, more moderate. The worst things are inability to sleep well and inability to stand more than 5-10mins b/c of severe NMH.
Anyway, if results come in as Doc expects we may be looking at IVIG and ritux treatment. I know several of you have had success with this approach. I am wondering if ppl who have tried this approach wld be willing to share their experiences. Have you improved? Have some gotten worse with this treatment?
I am very gun shy but also desperate. Every treatment I have tried has either made me worse or had no affect at all.
I know this is a very broad question, but I am too ill to make it more precise. Any feedback received is greatly appreciated.
Warmest Regards to Everyone!
Those of us who have been severely ill for many years know that we must do our due diligence before embarking on any new treatments and be open to the fact that there are no studies or research providing us concrete answers. We must decide ourselves if we trust our Dr's and are willing to take risks based on "non-traditional" test results and our Dr's clinical experience in treating our symptoms.
Over the past decade I have tried many treatments that have not worked or have made me worse. I have also laid in bed for years and done nothing, also getting worse under this "protocol". Basically there are no answers and we must make it through this living hell based on our wits and faith in each other and our Dr's.
This thread turned very unproductive, unfriendly and caustic quite quickly; that is not the direction or support I need while suffering so greatly. So before you wade into this thread please be prepared that it did turn ugly at some points and if your capacity for stress is low (like mine) you may not want to wade into this swamp.
There is some useful info from gingergrrl, Learner, Country Girl, Jeanne and Hip and others...I may be missing some....but there is also some nastiness directed at Dr's and a tone of having to defend your treatment even if it did in fact work for you.
I found the thread overbearing and intimidating and turned away from it for awhile until I received some private PM's that were more gentle and supportive.
I am not asking that people not disagree but I wish it could be done in a less hostile, accusatory manner.....one post told me I should fire my Dr.....because in my post I could not explain well my Dr's theory. My Dr's theory of this disease was also called bullshit?
Overall this thread was unpleasant and I will not be asking the board for direction or opinions again.
Thanks to all of you who did provide good useful direction.
Regards.
Hi:
I am seeing a new Doc who thinks my ME/CFS may be related to auto-immune issues. Many of you know who this Dr is and some of you have had success with his treatments. I will be having his myriad of testing done and from that point we will try to develop a plan of action.
I have been severely ill for 10+ years.....bedbound the last 6-7. I have debilitating fatigue, unrefreshing sleep, severe NMH, HPA dysfunction, EDS....etc. The only area I am lucky in this disease is my cognition is not severely affected, more moderate. The worst things are inability to sleep well and inability to stand more than 5-10mins b/c of severe NMH.
Anyway, if results come in as Doc expects we may be looking at IVIG and ritux treatment. I know several of you have had success with this approach. I am wondering if ppl who have tried this approach wld be willing to share their experiences. Have you improved? Have some gotten worse with this treatment?
I am very gun shy but also desperate. Every treatment I have tried has either made me worse or had no affect at all.
I know this is a very broad question, but I am too ill to make it more precise. Any feedback received is greatly appreciated.
Warmest Regards to Everyone!
Last edited: