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A thread to discuss lyme disease*  This thread currently has 174,359 views. Print Print Thread
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Kim
Wednesday, May 2, 2012, 12:24am Report to Moderator Report to Moderator

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Ee Dan
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Quoted from JJR


An arrhythmia is the first symptom I've gotten and I've had one for a long time.  That's weird how yours goes real low though.  Mine goes into a weird double time rhythm.  It's usually like 140-160 bpm.  They are no fun though.  I will say a prayer for you.  It's always scary when your heart doesn't beat the way it should.  I would start looking to the cellular level, and of course the nerves.  I think taking COq10 helps mine.  Plus cod liver oil.  

Someone was telling me that if you took a cell from the heart, the cell itself beats.  It's the only cell that does that.  Or something like that.  So, there may be some cellular junk needing to be cleaned out in you and me.  I know detoxing will help that.  

I have also found certain foods trigger it for me.  Onions do, without a shadow of a doubt.  Especially raw.  But I stay away from them, and it helps it not happen as much.  One time I start eating onion rings again, after having avoided onions, and sure enough, they started to happen again frequently.  It was no doubt that the onions were a trigger for me.  And I think caffeine too.  I don't drink any caffeinated drinks.  Even green tea I get the decaf kind.  


I don't see any triggers that cause it so far.  My DH has the opposite problem. His are ventricular tachycardia.  He goes up to 300 bpm and his heart just quivers.  It got so bad that he has a defibrillator/pacemaker now.  He has been shocked a couple of times but most times the pacemaker has taken care of the fast heart rate.  

He has had it for almost 4 years.  We had no idea he had Lyme disease when all this started.  His symptoms are very different from mine.  You can go either way with electrical problems when Lyme is involved.  Caffeine slightly increases my heart rate, but very little.  I only drink espresso, which actually has less caffeine than regular coffee.  Even then, I only drink it once or twice a day.  It is a beneficial on my swami.

My gastrointestinal system is greatly affected by the Lyme.  I will say, in support of my swami, that 5 years ago, I had a colonoscopy that showed the beginning of diverticulosis.  I just had another one and NO signs of diverticulosis at all.  No polyps either and everyone else in my family has had them when they get the test.  They just eat what they want and don't want to listen to me.  I have no doubt that the way I eat is keeping me afloat during this Lyme storm.

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Kim
Wednesday, May 2, 2012, 12:36am Report to Moderator Report to Moderator

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Ee Dan
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If you are interested in which states are most endemic for ticks or how your state stacks up for tick population and Lyme disease, go to this link:

http://www.lymememorial.org/State_Statistics.htm

We are retiring to the high mountains of Colorado, probably Fairplay or Alma.  We are taking a vacation out there at the end of this summer.  I will not stay in a state where I am bitten by ticks all the time.  I have seen articles where they go after certain people, like mosquitos do.  I am a magnet for them and one bite after I get better means a relapse.  Of all the people I email from Colorado who have Lyme disease, most got it somewhere else.  So from this link, the two best places to live are Colorado or Hawaii.
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ABJoe
Wednesday, May 2, 2012, 12:38am Report to Moderator Report to Moderator

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Quoted from Tom Martens
A is dominant to O.  

However, two Recessive O's make an O.

Both of my parents are A and there are 3 of us children that are O.

I realize this...  Her problem is that both parents are supposedly O, but she is an A...


RH-, ISTJ
Wonderful Wife = A+ Teacher; Darling Daughter = A- SWAMI Explorer
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JJR
Wednesday, May 2, 2012, 7:30pm Report to Moderator Report to Moderator

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Quoted from Kim


I don't see any triggers that cause it so far.  My DH has the opposite problem. His are ventricular tachycardia.  He goes up to 300 bpm and his heart just quivers.  It got so bad that he has a defibrillator/pacemaker now.  He has been shocked a couple of times but most times the pacemaker has taken care of the fast heart rate.  

He has had it for almost 4 years.  We had no idea he had Lyme disease when all this started.  His symptoms are very different from mine.  You can go either way with electrical problems when Lyme is involved.  Caffeine slightly increases my heart rate, but very little.  I only drink espresso, which actually has less caffeine than regular coffee.  Even then, I only drink it once or twice a day.  It is a beneficial on my swami.

My gastrointestinal system is greatly affected by the Lyme.  I will say, in support of my swami, that 5 years ago, I had a colonoscopy that showed the beginning of diverticulosis.  I just had another one and NO signs of diverticulosis at all.  No polyps either and everyone else in my family has had them when they get the test.  They just eat what they want and don't want to listen to me.  I have no doubt that the way I eat is keeping me afloat during this Lyme storm.




I agree with all that.  If it were me though, I'd quit the coffee for a bit, just to see if it is an issue.  All the doctors literature I've ever seen says if you have an arrhythmia, caffeine is the first place to look.  SWAMI or no SWAMI.  You wouldn't know unless you try.  I'm pretty sure it helped mine to quit it.  But I do feel that I'm more sensitive it than some.  Or was.  I haven't had it in a long while.  Before I had problems though, I drank 2 lattes a day at times.  Some of them doubles.  It didn't seem to mess with me at the time.  But that only lasted for so long.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Kim
Saturday, May 5, 2012, 12:09pm Report to Moderator Report to Moderator

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Quoted from JJR



I agree with all that.  If it were me though, I'd quit the coffee for a bit, just to see if it is an issue.  All the doctors literature I've ever seen says if you have an arrhythmia, caffeine is the first place to look.  SWAMI or no SWAMI.  You wouldn't know unless you try.  I'm pretty sure it helped mine to quit it.  But I do feel that I'm more sensitive it than some.  Or was.  I haven't had it in a long while.  Before I had problems though, I drank 2 lattes a day at times.  Some of them doubles.  It didn't seem to mess with me at the time.  But that only lasted for so long.  


I have quit the coffee for months at a time with no change.  I only now drink 2 ounces of espresso a day and it actually helps to bring my blood pressure up closer to normal.  It is still low even after coffee.  The bradycardic episode that dropped me to a pulse rate of 40 was when I was off coffee for a few days.  Once we know why this is happening, for sure, the doctors want me up on my BP a little so I can function.  It is very hard to catch this happening.  My DH went 4 years with ventricular tachycardia before they could catch it on an EP study.
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Tom Martens
Saturday, May 5, 2012, 12:38pm Report to Moderator Report to Moderator

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Quoted from ABJoe

I realize this...  Her problem is that both parents are supposedly O, but she is an A...




http://www.blackraptor.net/bloodgroups.htm


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Goldie
Sunday, May 6, 2012, 9:51am Report to Moderator Report to Moderator

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May I suggest here today that you read my post in the Trehalose COMPLEX  thread of today. It might have meaning to some here.. it seems to be powerful medicine.  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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JJR
Sunday, May 6, 2012, 8:21pm Report to Moderator Report to Moderator

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Quoted from Kim


I have quit the coffee for months at a time with no change.  I only now drink 2 ounces of espresso a day and it actually helps to bring my blood pressure up closer to normal.  It is still low even after coffee.  The bradycardic episode that dropped me to a pulse rate of 40 was when I was off coffee for a few days.  Once we know why this is happening, for sure, the doctors want me up on my BP a little so I can function.  It is very hard to catch this happening.  My DH went 4 years with ventricular tachycardia before they could catch it on an EP study.


I know you are an A, and I know some people might think I'm crazy for suggesting it.  And I could be wrong.  But for me, who is half an A, when I eat red meat, my BP goes up.  Especially lamb.  I too suffer from low BP.  There have been times where it was scary low, and I made myself some lamb, and wallah, it got it back to a better level. In a rather timely manner.    Just a thought.  I find venison and beef to do this also.  

But yeah, I could see how caffeine might help get your BP up too.  I'm trying to think if there would be anything else that might help.  What about peanuts?  I have no clue if it would help you.   Oh, Dr.D talks about licorice root tea also.  I'm not sure if that's good for an A either, but that supposedly raises BP.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Kim
Tuesday, May 8, 2012, 7:48pm Report to Moderator Report to Moderator

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Quoted from JJR


I know you are an A, and I know some people might think I'm crazy for suggesting it.  And I could be wrong.  But for me, who is half an A, when I eat red meat, my BP goes up.  Especially lamb.  I too suffer from low BP.  There have been times where it was scary low, and I made myself some lamb, and wallah, it got it back to a better level. In a rather timely manner.    Just a thought.  I find venison and beef to do this also.  

But yeah, I could see how caffeine might help get your BP up too.  I'm trying to think if there would be anything else that might help.  What about peanuts?  I have no clue if it would help you.   Oh, Dr.D talks about licorice root tea also.  I'm not sure if that's good for an A either, but that supposedly raises BP.  


I know there are things that could bring up my BP.  Licorice root for one, that is if I can tolerate it.  I think the thought is to be sure that there isn't an electrical problem from Lyme causing this.  If my heart has electrical problems pacing itself, that is another issue.  I am not dangerously low all the time, hence the arrhythmia's diagnosis.  It is random but I know that one of my antibiotics makes me dizzy when I take it, but it is different from the dizziness  I get when my BP tanks.  

I can't eat beef being an A.  I can eat lamb as long as it is small quantities, but that is a digestion issue.  Lyme has hit me hard in the GI tract.  Never noticed anything but coffee to bring up my BP unless I use a medication.  

If my heart has electrical issues, we have to find that out before I do things to increase  my BP.  Had my stress test today and feel like someone sucked the air out of me.  

Goldie-I have tried Trehalose complex with no benefits at all.  Not every supplement works for everyone.  
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JJR
Tuesday, May 8, 2012, 8:20pm Report to Moderator Report to Moderator

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Kyosha Nim
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Are you taking any neurotransmitter support type supps?  Like aaaaah, ANADH.  Or, shoot, I forget which ones will support that.  I think UBQH would help with that too.  Maybe B vitamins?  Oh oh I just forgot, sometimes if your adrenals are low, that can cause low BP.  I know taking drenatrophin or drenamin has helped me at times.  Or Adrenal 80.  

Even if it's electrical, the things that raise BP like licorice root, could still benefit you.  But yeah, it's good to know what is at the root of the problem.  But from what I gather by every doctor I've seen, they don't know WHY I have an arrhythmia.  The WHY is always the big guessing game.  My theory is that lyme has affected my vegas nerve.  Because sometimes they'll kick off if I bend over or going from bent over to standing up.  Sometimes I'll take a deep breath in quick and it'll kick them in.  It's like if there is a sudden change in and around the gut or vegas nerve, that'll do it.  And over doing it physically will kick them in too.  Which really stinks.  

I hear you about the red meats.  It was a long time before I could handle eating them.  I had a lot of gut healing to do.  I think I still do, but I am at least able to eat red meats now and digest them pretty well.  It will come.  I'm pretty sure cultured veggies and some other strange things like Manuka Honey helped heal my gut for me.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Kim
Wednesday, May 9, 2012, 9:59pm Report to Moderator Report to Moderator

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I have the MTHFR Mut gene anomaly heterozgous with one allele.  I have to do methylcobalamin injections daily and take Deplin for that.

Swami says no red meat.  Lately with Lyme causing issues in the GI tract, I can't even stand the smell of red meat if my DH cooks it in the house.  We are both finding that foods we liked taste lousy.  This seems to be on and off.  

My adrenals and hormones are still off.  I had a thermogram and was told my thyroid meds need to go up because there isn't any heat coming from them.  I see my naturepath next month and am getting adrenals, hormones, cortisol and thryoid tested again. I think all that needs adjusting but with Lyme it is an uphill battle until you can get the bacterial load down.

Finally on the current abx cocktail, I am getting a few hours here and there of relief from pain.  Of course, you have to deal with the cycling of the Lyme and coinfections that cause herxing.  Considering all that, I am doing better than most.  If I can get past this heart thing, then we will see.  Also, the cardiologist said my abdominal aorta is shallow.  I have a doppler of that scheduled next week.  Some people have a shallow abdominal aorta but it could also mean an aneurysm.  

I feel blessed that I am not having seizures and hallucinations like a lot of Lyme patients.
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Goldie
Friday, May 18, 2012, 2:15pm Report to Moderator Report to Moderator

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ABC is doing a 20/20 segment on chronic Lyme.  It will specifically speak about chronic Lyme in kids.  Those who miss it can watch it on abc.com online or hulu.com online after Friday evening.  Please send this to your friends to get the word out.  Lyme is an epidemic in the US.



http://lymeinside.wordpress.co.....-chroniclymedisease/

this was sent to me.. thanks for letting us know..  



Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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Goldie
Sunday, May 20, 2012, 12:51pm Report to Moderator Report to Moderator

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Sam Dan
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Did anyone see it.. ?   I have to see it on my computer which right now is blocking it..

That link above is impressive with all the info listed there.......... ?


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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Ribbit
Monday, May 21, 2012, 12:59am Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from JJR
Oh oh I just forgot, sometimes if your adrenals are low, that can cause low BP.  


What?!  It can?  Shoot!


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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JJR
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I think it did/does for me, for sure.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Ribbit
Tuesday, June 5, 2012, 3:25pm Report to Moderator Report to Moderator

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Kyosha Nim
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ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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JJR
Tuesday, June 5, 2012, 4:53pm Report to Moderator Report to Moderator

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Kyosha Nim
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Now cats might carry it.  Geez.  Plus, if that's the case, it's been around for a long long time.  Without people even knowing it.  It definitely, in my opinion, strengthens the case of that guy that developed homeopathy.  Because his theory is there are like 6 or so bad things that you have to deal with and those are at the root of all the disease.  At least, I think that's how it goes, in a very simplified way.  

I don't know if I told you this, but I have a friend from High School I've touched bases with a little bit lately and he has it.  He's going to a lyme literate doctor and seems like he's in good hands.  They gave him antibiotics, plus he's doing the byron white formulas along with that.  And he's researched it a bunch himself.  His wife also has been diagnosed and they have a niece that was diagnosed.  All from Igenex.  It's crazy.  At least it gave us something in common though.  But man, you would hope for other common denominators than some stupid, crazy, disease to give us something to talk about.  Which we do, but it is on the forefront of our conversation.  Oh Well. To God be the Glory.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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TJ
Wednesday, June 6, 2012, 1:36am Report to Moderator Report to Moderator

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I haven't given bartonella much thought, but I've had more than my fair share of cat scratches.
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Goldie
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Sam Dan
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how does the cat feel?  

I mean the sick cat.. do they feel ill or not? or a dog..

one dog had a dog tick on him sucking his blood.. the dog just layed around until the tick fell off, then the dog acted normal again..


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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Ribbit
Thursday, June 7, 2012, 2:37pm Report to Moderator Report to Moderator

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Kyosha Nim
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Different bacteria affects different animals differently.  Obviously Lyme disease doesn't kill the deer.  It can kill dogs and people.  Cat scratch fever doesn't bother the cats.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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JJR
Monday, June 11, 2012, 7:18pm Report to Moderator Report to Moderator

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Been feeling a little strange last couple of days.  I think the hotter weather is messing with me.  Nothing super terrible, but I've been more fatigued and my BP was real low last night.  I'm getting some Lamb today, maybe that will help. I haven't had it in about a month.  I feel like I'm fighting something.  I know that last year during the hot times was when I was feeling really really lousy.  Anyone else have the heat affect them?  I wonder if the lymes gets more active  in the heat.  Or maybe just my body gets sluggish from it.  No fever though.  That I can tell.  I haven't taken my temp, but I don't feel like I do when I used to get them.  At least my armpits seem to sweat good.  But I still don't sweat a whole lot anywhere else.  I did wake up this morning and my legs were sweaty where they were touching together while sleeping.  That's a good sign.

So far though, praise the LORD, it's nothing near as bad as last year.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Kyosha Nim
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I never do well in the heat. Some people hate the cold and love when it warms up, but I'm just the opposite. I've always been this way, for as long as I can remember.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  13yo B+ Jack


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JJR
Monday, June 11, 2012, 9:23pm Report to Moderator Report to Moderator

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Yeah, I've never been one for heat either.  I'm from the north.  Last few years not feeling well I wasn't much for the cold either.  But when I was young, I loved winter.  I was constantly out in the snow.  Summer was more like torture to me.  I played sports in it (baseball and football), but I enjoyed winter outdoor sports way more.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Ribbit
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Kyosha Nim
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I'm having heart problems.  It's not the first time, but I haven't had this problem since I started the BTD 7 years ago.  The last few days it's started up again and it's worse every day.  It feels like it skips a beat and then hurries to catch up.  It feels like it's beating really fast and lightly after it misses, but in actuality, when I feel my pulse, it's beating very hard and very slowly.  This happened to me regularly throughout my late teens and early 20s and only got worse with pregnancies and for several months after the baby was born.  I don't know why it's suddenly back after being gone for so many years.

At any rate, I'm going to see a cardiologist because I don't like it one little bit.  It's happening in clusters, like maybe a dozen times in an hour, and then it's okay for several hours, then it starts up again.  It's not linked with caffeine or stress.  Caffeine might be making it worse, but I can't quit coffee because I'd have to sleep half the day and I can't do that.

A friend let me borrow a blood pressure cuff.  Normally my bp is pretty low.  Like even during the last trimester of pregnancy, when it's supposed to go up, it's only like 90/60.  I've been taking it immediately after an episode and it'll be like 130/100.  I don't know why it's suddenly getting higher, but it's very unnerving.  I guess they'll run different tests to see why it's beating like it is.  I'm going to go to a cardiologist that's Lyme-friendly.

JJ, is this what your heart was doing?

I asked on the Ga Lyme Facebook page and every single person who commented has dealt with this same thing and they say it's typical Lyme heart.  It's kind of discouraging.

On the other hand, perhaps I'm herxing and it's a good thing to have the spirochetes un-cyst themselves.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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ABJoe
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Quoted from Ribbit
I'm having heart problems.  It's not the first time, but I haven't had this problem since I started the BTD 7 years ago.  The last few days it's started up again and it's worse every day.  It feels like it skips a beat and then hurries to catch up.  It feels like it's beating really fast and lightly after it misses, but in actuality, when I feel my pulse, it's beating very hard and very slowly.  This happened to me regularly throughout my late teens and early 20s and only got worse with pregnancies and for several months after the baby was born.  I don't know why it's suddenly back after being gone for so many years.

This sounds like a healing situation going on...  I'm having some similar and some other very unsettling symptoms that I don't ever remember having before, but I'm not going to worry about them.  I know the body is going through a huge healing process, so I'm going to deal with the symptoms and let the body work.

Hope you get some reasonable answer from the cardio Dr.


RH-, ISTJ
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