Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I was at a routine appointment a few weeks ago and had an episode of irregular heartbeat (like I've had off and on since I first got sick 2 years ago). Two doctors listened to it and thought it was A-fib.
I was sent to get an EKG and it was not as serious by the time I got there although I believe it was still slightly abnormal. I'm in my 20's with no history of smoking, drinking, drugs, poor diet, etc.
I was sent to a cardiologist and he wants to do an echocardiogram and a 30 day event monitor. It seems excessive to me. I feel like I'm being strung along. Plus I was taken off all Lyme treatment pending clearance from a cardiologist which will be at least 8 weeks from now. I'm not sure that I will be able to resume aggressive treatment anyway given this complication.
The cardiologist has not said anything to me other than the fever that I had 2 years ago may have caused damage to my heart (thus the echocardiogram). He wants to use the event monitor to see the arrhythmia and determine if the reason why I constantly get so close to fainting is from something with my heart.
I was not expecting him to do anything. I thought he would blow it off as a regular heart palpitation that everyone gets like almost every other doctor I've mentioned it to. I don't feel like I can trust a cardiologist's opinion when Lyme is involved. I feel like he is going to diagnose an isolated heart condition and treat it as such. He knows I have Lyme but not how I've treated it. He is not known to be Lyme-literate, just a standard cardiologist.
So now I'm off Lyme treatment awaiting all of this cardiac testing. To me it will not be helpful because I won't know if I can trust the diagnosis or if I should treat the issue symptomatically.
In my opinion, the heart issue intensified when I went off magnesium and started a low fat vegan diet for biofilms/protomyxzoa. I was also extremely overtired that week. I wish that they would have allowed me to reverse those factors before forcing me into a cardiology referral. I have since stopped doing both the diet and magnesium restriction and the heart palpitations are improving.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Sounds like a magnesium issue more than anything else...
Magnesium is required for muscle to relax, and also is required for nerves to function correctly. I personally believe it is foolish to restrict a critical element because the bugs will just steal it from our bones anyway.
I think you should go ahead with the echocardiogram & monitor. At least that would rule out problems from the fever...
Just my $02...
And BTW, I've just been through something similar myself...got the irregular heartbeat, was sent to Cardiology, did the echo & the monitor...all came back normal. But at least now I know that my heart itself is fine and that whatever was causing the irregular heartbeat isn't as serious...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Stephen Buhner suggests that you shouldn't restrict essential nutrients in a bid to eradicate the infections; that these bacteria act as parasites and will extract the nutrients they need, whether or not large amounts are available, leaving you with deficiency symptoms and declining health. His idea is instead to focus on taking in enough nutrients to spare your body from deficiency and instead address the cytokine pathways which make the nutrients available to the bacteria through inflammation and tissue destruction using the anti-inflammatory herbs specific for each infection.
I agree with Razzle, have the heart testing done to rule out any physical problems, but don't restrict essential nutrients. The parasites will always take what they need (an they don't care how sick you are).
My palpitations were bad for a while and a week- long holter-monitor test showed nothing except "normal" palpitations. These were not normal for me, and showed up all of a sudden. I have found bioidentical progesterone, magnesium and hawthorne tincture to be extremely helpful. My palpitations have completely resolved.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
Low fat foods aren't the best for you. If you are eating good fats but just restricting how much you eat of them, is better for your health. If you are weak, maybe you should increase your calories a bit.
Why did you go off magnesium? That may have complicated things.
I went through all those tests and was told I had bradycardia. I was faint a lot of the time but that improved with treatment.
My husband had the opposite problem. He had an arrhythmia that was determined to be ventricular tachycardia which is dangerous for sudden death. He now has a pacemaker/defibrillator implanted.
The tests are a good idea but know that all things that go with Lyme can cause all this.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I'm no longer on the diet or restricting magnesium. My heart irregularity is somewhat better, but I'm still scheduled for the tests.
I was treating protomyxzoa and the diet was suggested for my specific situation by a fairly well known ILADS doctor. I knew it wasn't the best idea since I'm already on the underweight side of the spectrum but at that point I would try anything for improvement so I took the risk.
I still prefer to treat aggressively. My quality of life is not great so I'm not risking much.
posted
I agree about the magnesium. You may indeed need to get things checked out, but being mag deficient will only harm your heart.
Just my bias. After seeing how much I've improved in all aspects of my life on ReMag, I can't imagine going back to being deficient.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
if you have not had these tests then i would say it's worth it, just for peace of mind, if nothing else.
i'm scheduled for them also, a full cardiac workup.
but i've got lots of issues and i have not had these tests done.
just because we have lyme does not mean we can't get other illnesses.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Right. I just think it's very unlikely that I have a completely unrelated heart issue going on in my 20's that started alongside every other symptom with a Lyme infection. I'm almost 100% sure that this cardiologist is not going to attribute any potential problems to Lyme.
Another doctor that I know (also non Lyme-literate) said he thinks the cardiologist is probably thinking rheumatic fever/rheumatic heart disease. On a positive note, that would probably be the best possible misdiagnosis since the treatment is prophylactic antibiotics.
posted
I wonder if a cardiologist would think it's too late for antibiotics in that case??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
In the case of rheumatic heart disease? According to the internet the treatment is prophylactic antibiotics (usually bicillin IM 1x every 3-4 weeks) long-term. Sometimes for life. I'm allergic to penicillin though.
I don't even know if that's what he's thinking. Another doctor that I know personally assumed that diagnosis based on the cardiologists comment about a fever 2 years ago causing damage. Doctors tend to avoid telling me anything so I'm left to speculate what they're thinking.
It actually crosses my mind that I could actually have complications from that fever. My illness started with a horrible sore throat and rash that could have easily been either atypical Lyme (as diagnosed by a NP) or the rheumatic rash. I tested negative for strep (the causative bacteria) even though I had a horrible sore throat and 105 degree fever but I also tested negative for Lyme (via ELISA). I have positive Lyme-specific bands on the western blot and a low CD57. Statistically based on my lifestyle I think Lyme is 100x as likely as rheumatic fever, but who knows.
I don't know anymore. I guess it doesn't even matter. Antibiotics don't help me anyway whether it's strep or Lyme.
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I'll throw my .02 cents in, and it's probably worth 2 pennies.
I agree with what's been posted- and, as small/ underweight, I don't think going low fat was a good idea at all- I am also
very lean/ small, and even if PR were an issue, my LLMD advised me not to go low fat-
I have been having heart palpatations for the first time in my life- very recently started- I got scared, went to walk in clinic,
my heart sounds 'clear' and I had an EKG (they ran it twice for me) all normal. However, I'm mid- 40's, hormones are off-
It is scary to think it's infection driven damage- If your EKG was slightly abnormal, and they can hear abnormalities,
I would get it checked out further for sure. Otherwise, it will be always lurking in your mind- underneath maybe, but there. Like it is for me- and my prelim. exam is normal.
I've been on natural pergesterone cream for 2 months, just started taking coq10, ordered Reg-Mag (ionic magnesium) and ordered Hawthorne (thanks reminder rowing mom)
But get it checked- sorry you are going through this, I know it's been very difficult- hang in there- your youth is on your side, get through this time, get better, good things in store.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
We posted at the same time- Summer, it does matter, you matter-
They will probably pull ASO strep titers- you can get those down if high- yes, they will give you antibiotics- strep is beat other than penicillins.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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I'm in agreement with the others - get the echo and wear the 30day holter monitor. You need to rule out other issues, even if the doc does not believe in chronic lyme.
My heart palpitations started in 2008..but I had no idea it was caused by lyme until last year when I was finally diagnosed. I wore a 24 hour and 30 day monitor, did a tilt table test, stress test, EKG, echo, etc. It showed I had an arrhythmia but nothing serious.
My heart palpitations went away after I started flagyl 8 months into treatment. Unfortunately, I stopped treatment too soon and they are back, but are less frequent.
I am thinking of going back to the cardiologist later this fall just to get retested to ensure there is no more damage, but I will not be mentioning the lyme.
I also take Mg supplements and it definitely helps with the palps.
Posts: 80 | From New England | Registered: Jun 2012
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