I recently completed 6 weeks of Mepron (1 teaspoon twice daily) and Zithromax (500 mg twice daily) for BABS. This is my first round of treatment for TBI.
The herxing was horrendous, but I hung in there because I thought that the BABS were dying off in a big way.
During the week after stopping the meds, I became significantly worse. I began having episodes of sharp chest pain (2-3 minutes only)and was unable to get out of bed. My mom took me took my Primary Dr. She took my vitals twice and then did an EKG.
She said that my body had been overtaxed my the treatment. She said that she wanted to slow down my heart rate (100-120 resting) and bring down my blood pressure (155/100). She prescribed Atenolol and insisted that I take a 2 month break from all treatment.
The Atenolol has brought my resting heart rate down in the 60's and I only have a slight ache in my chest evey now and then. I haven't checked my BP.
Has anyone else experienced cardiac problems during treatment?
Does anyone have any thoughts/info. on why this happened?
Thanks, Kim
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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seekhelp
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I'm sorry this happened. How scary. I hope you recover soon.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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feelfit
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Hi Kim,
I am having really tough symptoms and am treating babs as well. I go tachycardic 105-145 bpm doing anything other than lying down. I have also had chest pressure along with this. I was hospitalized last week for 4 days.
My blood pressure did not elevate though.
Every cardiac possibility has been ruled out. So, for me it is the infection, die-off, inflammation......maybe all of the above.
I have several other disturbing symptoms at the present time as well. Breathing and swallowing issues.
So to answer your question, there is not really a clear cut answer! I would make sure that you had a full cardio work-up though. At minimum an EKG, Echo, Event monitor and then go from there.
Zithromax alone can cause cardiac changes in the Q wave, I believe.
Good luck, and take good care!
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Seekhelp, thank you. I'm doing much better the past 3 days.
Feelfit, thanks for the advice. Are you taking a Beta-blocker to slow down your heart rate? What did the hopital MD have to say (I've always had bad experiences with hospital MDs)?
Kim
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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Bugg
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For what it's worth, I got in very bad shape on babs treatment (artemisinin, zithromax, and Mepron)...Mepron can really impact oxygen transport to muscle tissue....That is why my LLMD said that many must absolutely take COQ10, a ubiquinone, to restore those levels once your treatment is over....He now tests most of his patients' CoQ10 levels after they finish babs treatment and gives them injections if they are low in it....He also measures magnesium levels....He also thinks many patients stay on babs treatment way too long...
I did not have any problems with muscle twitching until AFTER I did babs treatment...Now I cannot get rid of it....I have no idea whether the babs treatment caused this or whether it's just the residual inflammatory damage from lyme disease itself (as many of us have this twitching)....
You might want to have your magnesium and CoQ10 levels tested....Sorry you're having such a hard time...
Posts: 1155 | From Southeast | Registered: Oct 2005
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I also have started having muscle twitching AFTER the Mepron/Zith! Never had it before. It's closely related to how tired I am...if I push myself and then lay down, I start twitching all over. If I take it easy all day, no twitching.
My LLMD never mentions any supplements. I'll ask him about COQ10 and Magnesium at my next appt.
Take care, Kim
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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karenl
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I have heart problems during sleep, I wake up and my heart is very fast and my left side is vibrating all over. But I have bartonella/protozoa. I use a magnesium spray. My babesia tests have been neg.
Posts: 1834 | From US | Registered: Oct 2008
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cottonbrain
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kim, feelfit, and bugg -- sorry to hear you had such bad reactions to mepron treatment.
My LLMD says the studies on coq10 and mepron aren't definitive, that it is not known for sure if coq10 reduces the effectiveness of mepron but that the coq10 is necessary for your health.
just food for thought.
[ 09-04-2009, 07:06 PM: Message edited by: cottonbrain ]
Posts: 1173 | From USA | Registered: Nov 2007
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Bugg
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Cottonbrain--That's interesting to hear....I'm glad you posted that...
Yes, KimDC, I am really concerned that babs treatment is creating some serious issues for some....muscle twitching...heart palpitations...heart fluttering....
I just received two private e-mails from people informing me they didn't have issues with their hearts until after babs treatment....
Posts: 1155 | From Southeast | Registered: Oct 2005
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TerryK
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I'm sorry you are having problems with your blood pressure and pulse. Problems with bp and pulse are common in lyme.
Did the EKG show actual heart problems? Did your doctor say that you have heart problems? I'm not a doctor but blood pressure and pulse are not always heart problems and in fact many of us have dysautonomia which causes our body to have difficulty with balance of our autonomic nervous system. This would include maintaining blood pressure and pulse.
Quite a few of us are on atenolol due to POTS (postural orthostatic tachycardia syndrome). This causes a fast pulse. I developed tachycardia long before lyme or babs treatment as did many others with TBI's (tick borne infections).
Unless your primary care doctor knows a lot about TBI's, I honestly don't think they are in a position to say that your babs treatment is why you have these symptoms.
This may not be the case for your doctor but many doctors don't like to see their patient in treatment for TBI's and would love to tell them that it's imperative that they take months to years off.
I'm not saying she's wrong when she says babs treatment overtaxed your body. I think she may be right but I would hope the doctor who prescribed your babesia treatment (if it isn't your primary) would have a chance to weight in since they treat many patients for babesia and they've seen all sorts of responses. They may have some good suggestions for you.
It is thought that babesia produces a toxin similar to borrelia (the pathogen that causes lyme). When in treatment, our body is flooded with toxins from dead bugs because instead of them dieing naturally over a period of time, we suddenly have a huge number of them dieing all at once. This really does tax our body. Some more than others.
Many of us need an aggressive detox program in place in order to tolerate treatment. Some of us need binders to remove certain toxins because our body does not remove them effeciently on it's own.
Have you contacted your LLMD and let the office know of your difficulties? Also, good idea to let them know what your primary said about going off treatment.
I hope your system calms down soon and the tachycardia and high blood pressure goes away quickly.
Terry I'm not a doctor
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TerryK
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BTW - the muscle twitching, flutters etc. can be caused by depleted minerals. Our detox system uses up lots more minerals when it has a lot of toxins to deal with. I had constant palpitations for awhile before I figured out that colloidal minerals took them away.
I actually had to go off the minerals in order to bring the problem back because my doctor had already ordered a holter monitor in order to see if the palpitations were dangerous or benign. They were benign.
karenl - if you are waking up with a fast pulse you may want to consider a sleep study to make sure that you don't have sleep apnea. Seems like that is also not uncommon in lyme patients. Your heart can be damaged due to untreated sleep apnea. Not saying that YOU have a damaged heart, just that it can happen with untreated sleep apnea. Please mention that you wake up with a fast pulse to your doctor.
If you snore, wake up choking, fall asleep during the day and some other symptoms that I can't remember at the moment it seems like it would be a good idea to ask for a sleep study.
What lab does your doc use to test CoQ10 and Magnesium. You had mentioned your LLMD tests these. Is Quest or Lab Corp okay for this?
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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sutherngrl
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I have had heart issues from the beginning of this illness, before and during treatment; but nothing very serious. I did take tenormin for a few months to try and calm down my PACs.
During treatment for Babs, I was on Malarone, my heart would pound very hard like it was coming out of my chest. Doc said it was caused by the Malarone, like a side effect. I only took one a day so I can't imagine what it would have been like if I had taken more.
I think the problem is it can sometimes be hard to tell if these issues are due to meds or lyme.
You have to be very cautious with meds and tell your LLMD everything that happens to you while on them. A good LLMD knows the difference between a herx and a side effect of the medication.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Bugg
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MorningSong-
Unfortunately I cannot recall which lab the doc used to test COQ10 levels and RBC (red blood cell levels) of magnesium. I seem to recall it was Quest but I'm just not sure.
I actually did IM magnesium (and chose to do some mag IVS) to get my heart to stop the fluttering. When I referred to heart issues in my earlier post, I was really referring to fluttering/rapid beats.... All of this, though, if you think about it is muscle related...If your legs are twitching....not surprising that your heart might flutter as well....
Anyway, I didn't mean to give the impression that babs treatment causes some type of permanent heart issues...Rather, I was just saying that myself and a number of others I've spoken with didn't experience muscle twitching and heart flutters until AFTER babs treatment....
Just anecdotal....
Hang in there....
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Thanks so much to eveyone who responded to my post! You guys are so helpful and supportive!
TERRYK, my primary said the EKG looked good. That's why I asked her if I really needed to take the atenolol. She said yes, but I'm not sure why since my heart rate never went over 120 in her office.
As for POTS, I've been wearing my husband's exercise heart monitor all day today and my heart rate is 95-105 when standing and walking and 85-90 when resting. Is that indicative of POTS? I'm not able to take my BP at home.
Also, I called my LLMD's office and filled him in. He said that a 2 month break was fine and also to have a full cardiac work-up before I begin IV abx. Honestly, I'm not very impressed with my LLMD, but he's the only one within 300 miles from me.
Thanks, Kim
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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posted
FYI - I am not a physician or nurse. The following info has been gleaned from reading and talking to a primary care doc, LLMD and a cardiologist for a pediatric case.
Problems with high or low blood pressure, heart rate, and fainting are relatively common in people with tick-borne diseases. (My teenager has Babesia and Bartonella and POTS is one of her major and lingering symptoms. POTS = postural orthostatic tachychardia syndrome. Basically the blood pressure drops and the heart beat speeds up to compensate when the person stands up.)
There are several conditions that these symptoms fall into. They are collectively known as "dysautonomia". If you search these threads for dysautonomia, POTS, or NMH you will find many entries with links to describe these diseases.
In order to get properly diagnosed for which (if any) version of dysautonomia you may have, please see a cardiologist. The doctor may be able to figure it out with a blood pressure cuff and heart-rate monitor, but more specialized equipment may be needed.
Tilt tables are often used as the readings may vary if you are standing or lying down. (Unfortunately, some people faint with these conditions, so the tilt table helps to keep you in the correct position for length of time in testing and provides a margin of safety.)
There are many different drugs used for treatment. Combinations of drugs may be needed. It actually took our pediatric cardiologist several months to work out a regimen. The drug amounts have been adjusted as my child has become more well and active over the past 8 months.
I wish you success in finding proper treatment for these symptoms. - Lymepool
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I hope you recover soon.
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