posted
Hi, I have not been here in a long time. I had late stage lyme dx'd in ~2003 and went thru a couple of years of tx with Dr. P. I got back to about 85% function and need an abx "tune up" every couple of years. I have been able to work FT. Life is pretty good compared to what it was when I crashed after being misdiagnosed for 13 years.
My last round of abx was about 3 years ago. I still have minor sx, mostly tolerable joint pain.
Since MAy, I've had some problems. Migrating joint pain more than usual. TEndonitis in arm (tennis elbow) as if I could play tennis even if I wanted to! But worst problem is palpitations- specifically, ventricular arrhythmia. (PVCs, some PACs). I have periods of vertigo (not at the same time as irreg heartbeats.
I had a 48 hour holter monitor that showed over 600 irreg beats in 48 hours, and those 2 days were mild compared to what I normally get. I did NOT have V-tach or V-fib.
I have a long hx of migraines- way before lyme, which were fairly well controlled on a beta blocker. Now they are nearly daily and I've increased the beta blocker with minimal results. The beta blocker SHOULD help with the ventricular arrhythmia, but it's not (or maybe, it might be much worse without it- who knows)
Anybody have arrhythmias related to lyme, and how were they treated? Do abx reverse this, or is it permanent damage to the heart's conduction system?
Here's another variable- all this started on MAy 10- my son's graduation- with unexplained severe knee pain. Followed by elbow pain (the tendonitis). Then the heart issues. I was cleaning my desk last week and found a paper with a tick taped to it, I was bitten again May 6th or so. I had forgotten. So I could be dealing with new infection on top of the remnants of the old infection?
I'm calling Dr P tomorrow for an appt but wondering if anyone else here has faced a similar problem.
Thanks.
Cindy
Posts: 688 | From CT | Registered: Jan 2003
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Dear Cindy, I would definitely get that tick tested and start some prophylactic ABX, if I were you. You have come so far, it would be a shame to lose any of your progress.
I have Paroxysmal Supraventricular Tachycardia (PSVT) caused by Lyme. It is not considered fixable, except by cardiac ablation. My heart doctor feels ablation would not help in my case, since I also have panic, heart attack symptoms, and major dysautonomic symptoms with my attacks, and ablation will not stop any of that. In addtion, ablation requires prophylactic ABX, and, as I explain below, that is not possible for me.
My PSVT is well controlled with Verapamil ER 240 mg. daily, plus 3 grams of L-tryptophan at bedtime, but I must still severely limit my life because of it, or I can have attacks despite the medicine. It has proven to be the most disabling of all my symptoms.
The reason for the L-tryptophan at bedtime is that it calms my nervous system greatly, by raising serotonin. Exertion is a major trigger for PSVTs, and though I am careful to limit my exertion in waking life, I often have dreams where I run or climb, and this can cause me to wake up having a PSVT attack.
I also have frequent, short runs of atrial fibrillation. I take Clonidine 0.2 mgs. 3 X daily for this and to keep my blood pressure down, since having it go up too high is the main cause of the atrial fib. I also cough hard to stop attacks when they happen.
I want to point out that by the time I was correctly dx'd with Lyme, my immune system was so messed up that I was allergic to all ABX that work on Lyme, so I have had zero ABX and must rely on herbals. Therefore, your results in trying to get rid of your problem may be far better than mine.
Re: your increase in migraines. You did not say how old you are. I started having one migraine per month at age 13 with my periods, but when I went into perimenopause, around age 37, they increased dramatically, in both frequency and length. I was told this is common.
I used a special narcotic drug made for migraines only, called Phrenalin (many docs have not heard of this drug,so you may have to get assertive to try it), plus a mild sleeping pill (Restoril) to deal with the headaches, until they finally ended, usually after about three days. Phrenalin is much safer than Imitrex for people like me with high blood pressure or any other cardiac risk factors.
When I completed menopause early, at age 45, my migraines stopped permanently. Since there are many types of migraines, not just menstrual ones like mine, you might check out other options. For example, Most Lymies are deficient in Magensium, and Mg supps. are supposed to help ease migraines also. I take 700 mgs. of Mg Citrate daily.
I am old enough to remember when you could get drugs that really worked on migraines and knocked them out completely. I used to take a combo of 50 mgs. of Phenergan and 30 mgs. of Seconal that gave me a nice long sleep and wiped the headache out totally with just one dose. Those days are over, thanks to the junkies, who caused the really effective drugs to be taken off the market.
Best of luck, klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Low magnesium within the cells can cause cardiac irregularities.
We Lymies are low in magnesium, because the Lyme bacteria use it up.
Supplemental magnesium is also helpful for migraines and anxiety.
You can google to find articles about it.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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I do take MG- Magnesium Maleate, as well as calcium, multivits, Omega 3s, garlic, milk thistle, glucosamine/chondroitin. I started taking most all of those in 2003 when I first got accurately dx'd.
I am 49, in early menopause for about 2 years. My migraines just recently picked up again. Last couple of months.
I'm wondering if a new round of abx will help the PVCs. I'm calling Dr. P tomorrow for an appt. I wonder if it's too late to get the tick tested......
I also drink immune support tea and detox tea nearly every day.
I take Fioricet for migraines which is very helpful for me. I tried Imitrex a few years ago and didn't like it.
Posts: 688 | From CT | Registered: Jan 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Cindy,
The magnesium sometimes needs to be pushed to bowel tolerance or taken as a liquid, a shot or an IV for it to be enough.
posted
The interesting thing about Mg serum tests, is that they don't necessarily prove you're deficient. I was reading the other day, that only 1% of the body's Mg is found in the serum, and your body tends to pull it from the organs, tissues, etc., in order to balance the equation.
So, it's very possible that you could be Mg deplete, and still show a normal blood serum level.
I've been having major muscle twitches for months, and I'm experimenting with taking more Mg, to see if it resolves the problem. I've been on abx for about 9 months, and the twitching has remained the same. I've read where abx can deplete the body of Mg, thus causing such things as neuro, cardiac, muscle issues.
It's been interesting, trying to figure out whether or not I truly have Lyme, or whether perhaps being on all of these abx has caused my problems. All I know, is that after 9 months of being on such things as Biaxin, Omnicef, Doxy, Flagyl, and Rifampin, my symptoms have remained about the same.
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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quote:Originally posted by CraigC: The interesting thing about Mg serum tests, is that they don't necessarily prove you're deficient. I was reading the other day, that only 1% of the body's Mg is found in the serum, and your body tends to pull it from the organs, tissues, etc., in order to balance the equation.
So, it's very possible that you could be Mg deplete, and still show a normal blood serum level.
I've been having major muscle twitches for months, and I'm experimenting with taking more Mg, to see if it resolves the problem. I've been on abx for about 9 months, and the twitching has remained the same. I've read where abx can deplete the body of Mg, thus causing such things as neuro, cardiac, muscle issues.
It's been interesting, trying to figure out whether or not I truly have Lyme, or whether perhaps being on all of these abx has caused my problems. All I know, is that after 9 months of being on such things as Biaxin, Omnicef, Doxy, Flagyl, and Rifampin, my symptoms have remained about the same.
sorry to hear that, I hope you are well soon. I was on and off abx for about 2 years before I turned the corner. It was slow going, and sometimes I just needed a break. But overall, when I got to about 85-90% better, and it held, things were pretty good.
Posts: 688 | From CT | Registered: Jan 2003
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PS... my metabolic panel was normal and the Mg is "fine."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
lymetoo, do you think your tachycardia is a permanent effect of lyme and co? this is one symptom that DOES NOT seem to be resolving no matter what and i'm afraid i'm going to have to be on atenolol forever and ever.
posted
My 24 hour Holter was packed with PVC's and some PAC's. I've gone through the echocardiogram, stress test, etc...normal. Now the electrophysiologist wants to do a cardiac MRI...I get a blank stare when I tell him I have Lyme and company.
I don't know if it's the Lyme, Bart, Babs, Ehrlichia...but I never had any of this before infection. I had the heart stuff prior to starting abx and it's still the same or worse. I've been on oral abx for 6 months.
My palps feel almost constant, it can be exhausting. I didn't go on a beta blocker, mainly because I just didn't want to add more pills to my already laundry list of meds. I have enough trouble getting down what I'm on already.
Anyway...keep us posted on what Dr. P thinks and how you're doing. Sorry you're having these troubles, no fun. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
In 2000/2001 I had a one/two punch of severe arrhythymmis & then a very bad and long-lasting bout of disabling vertigo.
I HAD a cardiac ablation. It was unsuccessful - the doc was unable to locate & 'burn out' the troublesome pattern. About two weeks later, my cardiac symptoms went away - which my doc said was 'impossible'.
Then, I had the verigo for about 9 months.
I became what I finally recognized as truly ill, in 2006. After the usual diagnostic nightmare, it turned out to be LD.
NOW, looking back, I have to wonder if 2000/2001 was all LYME? I had never been ill before or since, until 2006 and then at last the dx. It just seems very suspicious for LD, right? But we'll never know.
In the meantime, my actual point is, if the arrhthymmia is Lyme induced, would an ablation really help? Or will you just kick up another uncomfortable pattern the next time the LD decides to cause cardiac symptoms? Know what I mean? Could be a big waste of time and money.
BTW, if you do get other medical opinions which are pro-ablation, the whole procedure itself, while definitely major, was not really scary or a super big deal, so if it ever IS the right thing for you, don't worry too much about that aspect of it.
Best -
otm
Posts: 314 | From east coast | Registered: Oct 2007
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quote:Originally posted by heiwalove: lymetoo, do you think your tachycardia is a permanent effect of lyme and co? this is one symptom that DOES NOT seem to be resolving no matter what and i'm afraid i'm going to have to be on atenolol forever and ever.
yes, I do. I've been on atenolol for 7 yrs now
bleah
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Cadames...I'd be very cautious about that type of surgery. Read online on some of the heart disease boards. I've read several accounts from people who had their conditions be worsened by the ablation.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by Cadames62008: I was dx with pvst or it can also be called svt.
I see a cardiologist and did the treadmill test, echo, all good even though he had my heartrate to 200 lol.
I'm wearing the holter for the second time. He tried meds but since I have gotten lyme I also have some kind of reaction to meds
He wants to do the cathedor or ablation not sure if I spelt it right
he did say the palps were not dangerous just annoying since it was not affecting my heart.
hope this helps some.
fortunately I don't have tachycardia. (rapid heart rate). SVT, supraventricular tachycardia), is where the rate is arising from above the ventricles. (as opposed to ventricular tachycardia- you know those dramatic moments you see on medical dramas!) I don't think ablation is used for non-tachy arrhythmias?
Posts: 688 | From CT | Registered: Jan 2003
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posted
I switched from Atenolol to Toprol (extended release Lopressor) today for migraine control, we'll see if it has any effect on the PVcs.
Posts: 688 | From CT | Registered: Jan 2003
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fortunately I don't have tachycardia. (rapid heart rate). SVT, supraventricular tachycardia), is where the rate is arising from above the ventricles. (as opposed to ventricular tachycardia- you know those dramatic moments you see on medical dramas!) I don't think ablation is used for non-tachy arrhythmias?
it is that is what my cardiologist said is the fix. He is aware I have lyme and accepts that I have it.
My heartrate does get very high at times it is normally at 110 high for me is 150ish there were also contractions showed on the one holter test I did
I am going to wait to see if the palps resolve as I go through treatment b4 I get the surgery though
-------------------- Christina Posts: 102 | From Lacey Washington | Registered: Jul 2008
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posted
I think waiting is a good idea. Through my treatment, etc (since Feb/march 2007), while I have sometimes experienced the old rapid heartbeat, lurching, slamming & pain, it is VERY rare, doesn't last, and is NEVER as bad as it was when I was most symptomatic (cardiac-wise!!), before I knew I had LD.
I bet treatment will make your cardiac symptoms much better - or get rid of them entirely! - as long as you find an antibiotic that you respond to & take it at a high enough dosage.
best -
otm
Posts: 314 | From east coast | Registered: Oct 2007
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quote:Originally posted by onthemend: I think waiting is a good idea. Through my treatment, etc (since Feb/march 2007), while I have sometimes experienced the old rapid heartbeat, lurching, slamming & pain, it is VERY rare, doesn't last, and is NEVER as bad as it was when I was most symptomatic (cardiac-wise!!), before I knew I had LD.
I bet treatment will make your cardiac symptoms much better - or get rid of them entirely! - as long as you find an antibiotic that you respond to & take it at a high enough dosage.
best -
otm
yes, i thought I'd wait til after my LLMD appt before pursuing with a cardiologist. (my GP is good for sore throats and earaches and that's about it!)
Posts: 688 | From CT | Registered: Jan 2003
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posted
well, 3rd day on Toprol, no change in arrhythmia, and had a migraine this morning. I was hoping it would be alittle better than the Atenolol on both counts.
Posts: 688 | From CT | Registered: Jan 2003
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posted
oh,-- do I dare even mention- hate to tempt fate-- Been on the Toprol for about a week, and today is the first day since ~May that I can't recall any irregular beats. It's a long wait til my early Oct. LLMD appt, but maybe things are looking a little hopeful.
Posts: 688 | From CT | Registered: Jan 2003
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