Hi
I thought I would give an update on my quest to find out what is wrong with me.
Anyway, in short I thought I might have CFS and everyone (9 doctors, including William Weir, a rheumatologist and neurologist said I didn't).
I began to doubt my own sanity. I had booked to see KDM two months ago and actually wrote to him saying
'Everyone thinks I have anxiety, what do you think? Should I cancel?' I gave a list of my symtoms.
I begged his secretary to forward my email and she did and within the hour the prof. had written back to say
'no, I think you should come'.
I was more than surprised. I have no real fatigue, no swollen lymph nodes, no PEM and no cognitive difficulties. Just weird bladder burning, sleep problems (can't maintain sleep) and burning in feet and hands, oh and I am bright red like a tomato most days.
Anyway here I am, right now in Belgium. Saw KDM today, he was very friendly, very chatty and said he thought I had Bartonella and probably Lyme disease. (I do have a cat! but London is not exactly Lyme country....although I have removed ticks from my cat and been scratched by him....I don't remember a bull's eye rash though)
Tomorrow I am to have many blood tests.
But he says I have probably had it years and it was triggered by an infection.
He says there is no such thing as CFS/ME. That all CFS/ME problems manifest as immune/gut problems but are caused by: Lyme, operations, vaccinations, Bartonella and such - all l kinds of different stuff. Sorry if I am teaching my grandmother to suck eggs here. I am new to this remember!
Worried that if I have had it this long will my daughter who is 4 have it?
I really liked him, I am just confused as I wrote to a lyme specialist in London months ago and he said my symptoms were not consistent with lyme, even though they did seem to be when I checked them against a Lyme symptom list.
Overall I am really glad someone does not think I am just have GAD though, If there is a moral to this story, it is trust what your body is telling you and keep pushing. I know people out there have been back and forth for years. I have only been symptomatic 6 months and I do feel better that something 'might' happen now and I may get better.
If anyone is interested, the previous discussions are here...I am not saying anyone would be..I do rant on but hey ho, it's here if you're bored.
http://forums.phoenixrising.me/inde...-forum-and-worried-i-might-have-cfs-me.23820/
http://forums.phoenixrising.me/index.php?threads/update-on-my-cfs-diagnosis.23947/
I thought I would give an update on my quest to find out what is wrong with me.
Anyway, in short I thought I might have CFS and everyone (9 doctors, including William Weir, a rheumatologist and neurologist said I didn't).
I began to doubt my own sanity. I had booked to see KDM two months ago and actually wrote to him saying
'Everyone thinks I have anxiety, what do you think? Should I cancel?' I gave a list of my symtoms.
I begged his secretary to forward my email and she did and within the hour the prof. had written back to say
'no, I think you should come'.
I was more than surprised. I have no real fatigue, no swollen lymph nodes, no PEM and no cognitive difficulties. Just weird bladder burning, sleep problems (can't maintain sleep) and burning in feet and hands, oh and I am bright red like a tomato most days.
Anyway here I am, right now in Belgium. Saw KDM today, he was very friendly, very chatty and said he thought I had Bartonella and probably Lyme disease. (I do have a cat! but London is not exactly Lyme country....although I have removed ticks from my cat and been scratched by him....I don't remember a bull's eye rash though)
Tomorrow I am to have many blood tests.
But he says I have probably had it years and it was triggered by an infection.
He says there is no such thing as CFS/ME. That all CFS/ME problems manifest as immune/gut problems but are caused by: Lyme, operations, vaccinations, Bartonella and such - all l kinds of different stuff. Sorry if I am teaching my grandmother to suck eggs here. I am new to this remember!
Worried that if I have had it this long will my daughter who is 4 have it?
I really liked him, I am just confused as I wrote to a lyme specialist in London months ago and he said my symptoms were not consistent with lyme, even though they did seem to be when I checked them against a Lyme symptom list.
Overall I am really glad someone does not think I am just have GAD though, If there is a moral to this story, it is trust what your body is telling you and keep pushing. I know people out there have been back and forth for years. I have only been symptomatic 6 months and I do feel better that something 'might' happen now and I may get better.
If anyone is interested, the previous discussions are here...I am not saying anyone would be..I do rant on but hey ho, it's here if you're bored.
http://forums.phoenixrising.me/inde...-forum-and-worried-i-might-have-cfs-me.23820/
http://forums.phoenixrising.me/index.php?threads/update-on-my-cfs-diagnosis.23947/