Hi everyone,
I am Thomas. I am in my mid 30's from Ontario, Canada. I have been reading the PR website and forums since getting ME in November of 2011 after a flu shot (and some other neuro-immune stressors). I have been diagnosed by Byron Hyde here in Canada, and Dr. Bradstreet in Atlanta. More on that in a moment...
I will try and keep my story brief, but basically I have always been a high functioning and motivated person (sound familiar), outgoing, social, fun etc...but also tended to be a little weaker in constitution than most people. Always been underweight (EDS or hypermobility anyone?) and always battled IBS even for 15 years before my acute onset. I can be a little anxious and depressed also. But overall life was fine and I was getting things done. That is of course until the virus (or cytokine storm from the vaccine) hit and my world changed.
The acute virus lasted about 2 weeks before i made a decent recovery. A week later the ME symptoms arrived (exhaustion, brain fog, tinnitus, insomnia, night sweats, neuro stuff, crushing fatigue etc...). Was off work for a few months then felt a bit better with a little help from my parents and went back to work part time. Luckily i am in sales and can set my own hours. I had to move condos (twice) which was a major stress and something i shouldnt have done but i had a mold issue and it was necessary.
Anyways, year 1 wasnt that bad actually in hindsight. I feel like i was able to do more. The brain fog was manageable and i was balancing things nicely but still not doing much. Consulted with Dr. Hyde who ran some tests - I had a normal MRI but a slightly abnormal SPECT that he wants to repeat in October. I consulted with Dr. Bradstreet who i did GcMAF with which was a major let down and made me worse i think. That was all in year 1. Around this time last year though the brain fog "spaced out" feeling has become much more intense. I hate it. I went from insomnia to hypersomnia as my brain just doesnt seem to want to wake up. I am on amitryptyline for sleep and 100 mg of wellbutrin without major differences. But this spaced out drunk feeling is very troubling and i am concerned as it is the one symptom you do not want getting worse. Like who cares if i get a little muscle pain, but cognitive symptoms are scary. Where does it end?
I am now approaching 22 months of ME and fatigue, brain fog, and mental exhaustion are worse than ever. Like i just cant use my brain without feeling extremely overwhelmed. Can this symptom improve over time? I want to be able to think again and make mental decisions.
It is strange, year 1 i was full of optimism and Doctor shopping and eager to try treatments and i was feeling like i could beat this thing. Now almost 2 years in i feel deflated, and exhausted, i have lost weight and muscle mass and i am overall feeling not nearly as optimistic as i was. I hope that is just a temporary down and that i will regain that vigor. Can anyone relate? I hate this apathy.
As for tests all my blood work is fine, i dont seem to have any oxidative stress and while i have IBS my genova cdsa is pretty good so my gut seems fine on paper but not in reality, my vitamin d is normal and my immune markers are normal. I have mycoplasma but thats a dubious diagnosis, lyme might be an issue but that's a long and lonely road, my shoemaker markers (c4a, vegf, tgfb1, msh etc) are not normal at all so i am looking into detox etc..my c3a is normal though.
Dr. Hyde told me that the brain has a natural way of healing itself but it takes time. He said he feels i will make substantial improvements but i seem to be declining. So not quite sure. A lot of the flu like symptoms are gone but i dont see that as improvement. I want my cognition back...desparately. I should also add that depression has become an issue as well as my cognition gets bad i get really down about it but i am working on that. Anyways, this is my first post and it seems like a lot of people get better in time. David Bell (who i know) told not to listen to people out there, that improvement and even recovery is very possible, even after years of illness. But i have to have patience. Any advice would be welcomed! But only nice advice i am terrified of ME horror stories but i know they are out there.
Regards,
T.
Ps - i didnt see the "introduce yourself" section until after composing this. Feel free to move this if it is in the wrong section.
I am Thomas. I am in my mid 30's from Ontario, Canada. I have been reading the PR website and forums since getting ME in November of 2011 after a flu shot (and some other neuro-immune stressors). I have been diagnosed by Byron Hyde here in Canada, and Dr. Bradstreet in Atlanta. More on that in a moment...
I will try and keep my story brief, but basically I have always been a high functioning and motivated person (sound familiar), outgoing, social, fun etc...but also tended to be a little weaker in constitution than most people. Always been underweight (EDS or hypermobility anyone?) and always battled IBS even for 15 years before my acute onset. I can be a little anxious and depressed also. But overall life was fine and I was getting things done. That is of course until the virus (or cytokine storm from the vaccine) hit and my world changed.
The acute virus lasted about 2 weeks before i made a decent recovery. A week later the ME symptoms arrived (exhaustion, brain fog, tinnitus, insomnia, night sweats, neuro stuff, crushing fatigue etc...). Was off work for a few months then felt a bit better with a little help from my parents and went back to work part time. Luckily i am in sales and can set my own hours. I had to move condos (twice) which was a major stress and something i shouldnt have done but i had a mold issue and it was necessary.
Anyways, year 1 wasnt that bad actually in hindsight. I feel like i was able to do more. The brain fog was manageable and i was balancing things nicely but still not doing much. Consulted with Dr. Hyde who ran some tests - I had a normal MRI but a slightly abnormal SPECT that he wants to repeat in October. I consulted with Dr. Bradstreet who i did GcMAF with which was a major let down and made me worse i think. That was all in year 1. Around this time last year though the brain fog "spaced out" feeling has become much more intense. I hate it. I went from insomnia to hypersomnia as my brain just doesnt seem to want to wake up. I am on amitryptyline for sleep and 100 mg of wellbutrin without major differences. But this spaced out drunk feeling is very troubling and i am concerned as it is the one symptom you do not want getting worse. Like who cares if i get a little muscle pain, but cognitive symptoms are scary. Where does it end?
I am now approaching 22 months of ME and fatigue, brain fog, and mental exhaustion are worse than ever. Like i just cant use my brain without feeling extremely overwhelmed. Can this symptom improve over time? I want to be able to think again and make mental decisions.
It is strange, year 1 i was full of optimism and Doctor shopping and eager to try treatments and i was feeling like i could beat this thing. Now almost 2 years in i feel deflated, and exhausted, i have lost weight and muscle mass and i am overall feeling not nearly as optimistic as i was. I hope that is just a temporary down and that i will regain that vigor. Can anyone relate? I hate this apathy.
As for tests all my blood work is fine, i dont seem to have any oxidative stress and while i have IBS my genova cdsa is pretty good so my gut seems fine on paper but not in reality, my vitamin d is normal and my immune markers are normal. I have mycoplasma but thats a dubious diagnosis, lyme might be an issue but that's a long and lonely road, my shoemaker markers (c4a, vegf, tgfb1, msh etc) are not normal at all so i am looking into detox etc..my c3a is normal though.
Dr. Hyde told me that the brain has a natural way of healing itself but it takes time. He said he feels i will make substantial improvements but i seem to be declining. So not quite sure. A lot of the flu like symptoms are gone but i dont see that as improvement. I want my cognition back...desparately. I should also add that depression has become an issue as well as my cognition gets bad i get really down about it but i am working on that. Anyways, this is my first post and it seems like a lot of people get better in time. David Bell (who i know) told not to listen to people out there, that improvement and even recovery is very possible, even after years of illness. But i have to have patience. Any advice would be welcomed! But only nice advice i am terrified of ME horror stories but i know they are out there.
Regards,
T.
Ps - i didnt see the "introduce yourself" section until after composing this. Feel free to move this if it is in the wrong section.