Swedish Patient/Heart Problems

[Guest guest]

A few months ago a patient in Sweden posted about her unusual heart symptoms,

and they matched mine exactly but seem fairly unusual amongst CFIDS patients.?

In short, for three years, I was experiencing this continuous crushing,

suffocating sensation as if my visceral heart was being dramatically squeezed.?

The sensation was so intense, I literally felt like I was dying all the time,

every day, almost every minute, like I was having an acute cardiac episode that

just never ended.? Though I had experienced OI and chest pains and other cardiac

symptoms in my previous CFIDS years, this symptom was on a whole new level, a

feeling that the life and all vital oxygen was being squeezed out of me, that my

heart was having to press against iron walls to beat and in a very constricted

space? (I remember the Swedish patient who posted describing this as being

kicked in the heart by a horse). I was also unable to sit up and had to keep my

legs elevated at all times of the symptom would get much worse, often for hours

or days.? So going to the bathroom meant rushing very quickly in my wheelchair,

then lying down again as quickly as possible.? I would usually eat my meals

lying down.?

Anyway, a twist happened in my story.? I was bit by a tick, and subsequently

diagnosed with Lyme disease on top of CFIDS and MCS.? I got much sicker and

began having severe shaking chills and many other new symptoms including an

increase in fatigue and cognitive problems.? I was trying antibiotic after

antibiotic and found that some of them caused a moderate improvement in my

cardiac symptoms.? Then I got a prescription for Cipro.? After six weeks of

Cipro, I was able to sit up again and it was truly like a miracle.? The

squeezing in my heart had decreased substantially.? It was the first improvement

of these horrific heart symptoms in three years.? I had to stop the Cipro after

six weeks because my liver enzymes became elevated and I was having tendon pain

(Cipro can cause tendon damage), but the improvements to my heart have continued

over the past month of being off of Cipro, and my liver enzymes are returning to

normal.?

Because people infected with Lyme often have coinfections such as bartonella and

babesia, and because Cipro tends to be most effective against bartonella, my

doctor now suspects bartonella as the culprit.? Bartonella has a real affinity

for the heart, and is also endemic to Sweden.? A lot of bartonella heart

problems occur in immune-compromised individuals (and can be deadly).? I truly

believe that Cipro saved my life.? My bartonella diagnosis is not conclusive at

this point (I'm awaiting test results) but there are numerous strains and the

tests don't often cover all of them anyway.?

Since I live in a wooded area, it's very possible I was bitten three years ago,

when my heart symptoms suddenly got so bad.? I can't even begin to emphasize how

bad and scary these heart symptoms have been.? In fifteen years of

mostly-bedridden, very severe CFIDS, nothing has come close to matching the

severity of this cardiac horror.?

Since I have been following the CFIDS/cardiac information for years, and my

worsening symptoms happened to coincide with Cheney's talks about the heart, I

wouldn't have imagined that one potent antibiotic would solve my worst heart

problems -- as I thought I simply had a very severe version of CFIDS-induced

diastolic heart failure.? I had gotten an Impedence Cardiography test when

Cheney was using that test on his patients (per the Peckerman paper) and was

found to have extremely low cardiac output.? I haven't retested since the

antibiotic improvement, but I wanted to share my experience with others who

might have similar symptoms.? Also if anyone knows the patient who posted

previously and could forward this to her, I would greatly appreciate it!

Peggy

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[Guest guest]

Peggy,

I have an e-friend in Sweden who knows (the heart patient you

are referring to). I forwaded my friend your message and asked her

to send it on to . Thank-you,

Dani

>

> A few months ago a patient in Sweden posted about her unusual heart

symptoms, and they matched mine exactly but seem fairly unusual

amongst CFIDS patients.? ....I wanted to share my experience with

others who might have similar symptoms.? Also if anyone knows the

patient who posted previously and could forward this to her, I would

greatly appreciate it!

>

> Peggy

>

>

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> More new features than ever. Check out the new AOL Mail ! -

http://webmail.aol.com

>

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