Oh, and I recently contacted one of the few Yersinia researchers in the UK, to see if there were any clinicians in the NHS who treat this, and he accepted that it was likely that I had Yersinia (because he had actually read something about the disease). Unfortunately, however, he couldn't think of anyone who treated it.
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Lyme Diagnosis
- Thread starter yabeeb
- Start date
Daffodil
Senior Member
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- 5,875
another update: major downturn again! last several days have been REALLY sick....sleeping most of the day, feeling horrid. mild chest pain, lymph node aching, very bad fog, etc. i think it could be die off - i hope - and/or PMS. sometimes, during PMS, the CFS gets really bad. also could just be getting worse....
going to Belgium in 3 weeks.
going to Belgium in 3 weeks.
Daffodil
Senior Member
- Messages
- 5,875
i continue to feel sicker. I have low grade fevers and feel hopeless. I also have bad brain fog, chest pain, severe fatigue.
since I have always had a high CD8 count, which indicates virus, I sometimes think this isn't bacteria at all but a virus we cannot find.
anyway, I wonder if my heart will give out soon since its been 22 years now. going to Brussels soon but am without much hope at this point.
since I have always had a high CD8 count, which indicates virus, I sometimes think this isn't bacteria at all but a virus we cannot find.
anyway, I wonder if my heart will give out soon since its been 22 years now. going to Brussels soon but am without much hope at this point.
HI Daffodil,
I'm sorry to hear you are having a tough(er) time at the moment. I have only been ill for a year, so I can't imagine what it's like to be ill for 22 years.
Re: CD8, I found this study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2193328/
And this one: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2193328/
So it seems that CD8 cells are also involved in fighting intracellular bacteria, such as Lyme.
Re: worrying about your heart, I worried about this too when I heard about Vanessa Li's passing, but I think it would be wrong to draw any conclusions based on it, the family themselves seemed to attribute it to the painkillers she took.
Anyway, I hope you start feeling better soon.
I'm sorry to hear you are having a tough(er) time at the moment. I have only been ill for a year, so I can't imagine what it's like to be ill for 22 years.
Re: CD8, I found this study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2193328/
And this one: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2193328/
So it seems that CD8 cells are also involved in fighting intracellular bacteria, such as Lyme.
Re: worrying about your heart, I worried about this too when I heard about Vanessa Li's passing, but I think it would be wrong to draw any conclusions based on it, the family themselves seemed to attribute it to the painkillers she took.
Anyway, I hope you start feeling better soon.
Daffodil
Senior Member
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- 5,875
hi guys. thanks a lot for your responses. its true, Vanessa's passing is affecting me quite a bit..increased the hopelessness, I guess. almost no stories with good news; always bad news.
my mom watches a lot of hindu discourses. they always say to just accept what is happening...that what is going to happen is going to happen. this is comforting to me but sometimes its hard to do. I am getting better at it, though.
msf...I am not sure it was painkillers....it says she only took the one as she usually does. she was hopeful about new treatment....I don't get it. it's like there is no warning...heart tests normal....it can just stop at anytime. it happened to Pat Fero's son, too I think. he went to sleep and never woke up and I think his cardiac tests were normal too.
anyway, just lots of worries and lack of progress getting to me again.
xoxoxox
my mom watches a lot of hindu discourses. they always say to just accept what is happening...that what is going to happen is going to happen. this is comforting to me but sometimes its hard to do. I am getting better at it, though.
msf...I am not sure it was painkillers....it says she only took the one as she usually does. she was hopeful about new treatment....I don't get it. it's like there is no warning...heart tests normal....it can just stop at anytime. it happened to Pat Fero's son, too I think. he went to sleep and never woke up and I think his cardiac tests were normal too.
anyway, just lots of worries and lack of progress getting to me again.
xoxoxox
I don't know much about her case, and I don't think it's helpful to openly speculate (even if it's very natural to), but the family's press release mentioned painkillers, but said that it did not seem to be an overdose, so I was just connecting the dots (sorry, speculating). Anyway, although tragic early deaths like this aren't unknown in ME, they are definitely not the norm (if we believe the study that found that ME patients lived about 10 years less on average).
aquariusgirl
Senior Member
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- 1,732
Vanessa's brother just posted on fb. It was not heart failure.
https://www.facebook.com/vanessali19812015?fref=nf
https://www.facebook.com/vanessali19812015?fref=nf
Yes, I thought it might have been suicide, especially when I googled her posts and some of them openly discussed this, but I didn't want to speculate. It's sad that she could be so positive and pro-active about finding a cause for her illness, and yet see no alternative to ending her own life.